Perseverance time of informal carers A new concept in dementia care

Transcription

1 Perseverance time of informal carers A new concept in dementia care Validation and exploration Henk Kraijo

2 Cover painting by: Jannie Kraijo-Holleman Printed by: Gildeprint The Netherlands The production costs of this dissertation were co-funded by: Vivium Zorggroep, Thuiszorg Gooi en Vechtstreek, HilverZorg, and Amaris Zorggroep. Title: Perseverance time of informal carers A new concept in dementia care Utrecht University, Julius Centre Thesis University Utrecht ISBN Henk Kraijo and co-authors

3 Perseverance time of informal carers A new concept in dementia care Validation and exploration Volhoudtijd van mantelzorgers Een nieuw concept voor dementiezorg Validering en exploratie Proefschrift ter verkrijging van de graad van doctor aan de Universiteit Utrecht op gezag van de rector magnificus, prof.dr. G.J. van der Zwaan, ingevolge het besluit van het college voor promoties in het openbaar te verdedigen op vrijdag 13 maart 2015 des middags te uur door Hendrik Kraijo geboren op 4 juli 1947 te Rotterdam

4 Promotoren: Copromotoren: Prof.dr. A.J.P. Schrijvers Prof.dr. W.B.F. Brouwer Dr. J.R.J. de Leeuw Dr. N.J.A. van Exel

5 Aan mijn vrouw Jannie

6 Beoordelingscommissie: Prof.dr. J.J.M. van Delden Prof.dr. R. Huijsman Dr. M.A. Koopmanschap Prof.dr. M.J. Schuurmans Prof.dr. N.J. de Wit

7 CONTENTS 1. General introduction Context of the study Dementia and caregiving Perseverance time: origin, definition, and purpose Research questions and structure of the thesis Perseverance time of informal carers of persons with dementia: 21 validation of a new concept and measure to initiate transition of care at home to nursing home care. 3. Perseverance time of informal carers for relatives with dementia: 45 results of a two year follow-up study. 4. Coping with caring: Profiles of caregiving by informal carers living 71 with a person with dementia. Appendix: Profiles of caregiving in longitudinal perspective. 5. How spouses evaluate Nursing Home Placement of their partner 103 with dementia: a study about the end of perseverance time. 6. Right Time Transition of persons with dementia to a nursing home in 123 informal cares point of view: A longitudinal study of perseverance time. 7. General discussion and conclusion Main findings Limitations and methodical considerations Implications for practice Future research General conclusion 162 List of references 167 Summary 179 Samenvatting 187 Dankwoord 197 Over de auteur 199

8

9 Chapter 1 General introduction

10 Chapter 1 10

11 General introduction 1.1. Context of the study Dementia is a syndrome that generally affects the elderly, and can be caused by a number of disorders that affect memory, thinking, behaviour, and the ability to perform everyday activities [Borsje et al., 2014]. Alzheimer s disease is the most common type of dementia. Typically, dementia is progressive illness in nature and, in the absence of a cure, persons with dementia deteriorate over time until they die. In the World Alzheimer Report (2010) it was estimated that, in 2010, some 35.6 million persons were suffering from dementia worldwide. Moreover, it indicated that this number was expected to increase to 65.7 million by 2030, and to million by 2050 due to the ageing of populations and the fact that dementia is especially prevalent among the elderly. Such projections indicate the need to anticipate this steep increase in the prevalence of dementia in order to remain able to provide timely and sufficient care. Often, the care for persons with dementia starts at home, where informal and formal care may be combined (when the severity of the disease is still in an early phase), but mostly ends with an admission to a nursing home (when the disease becomes too severe). In light of the increasing numbers of persons with dementia, it is expected that the demand for formal and informal care for these persons will also increase sharply. The World Health Organization has contributed to awareness of this problem. In 2012 it published the report Dementia: a public health priority, which encouraged countries to prepare themselves for this by developing and strengthening policies aimed at enhancing dementia care. This should ultimately improve the social well-being and quality of life of those living with dementia as well as their informal carers. National governments also appear to be increasingly aware of the important challenges they face in light of the increase in dementia prevalence. The Obama administration, for example, stimulated Alzheimer s research by investing 156 million dollars in 2014 and Action is also being undertaken in the European Union, where 26 European countries in cooperation with Canada are working together in the Joint Programming Initiative on Neurodegenerative Diseases 1 United States Department of Health and Human Services, 7 February

12 Chapter 1 (JPND). Initiatives have also been launched at national level. In the Netherlands, for example, the government initiated the Master plan for Dementia, which includes plans for integrated registration of persons with dementia, an e-health portal, and a research programme [Dutch Ministry of Health, Welfare, and Sport, 2013]. The national research programme is focussed on prevention and cure of dementia, and on quality of life and care for persons with dementia as well as for their informal carers. Increasingly, informal care is recognized as being highly important within the context of the care for persons with dementia. However, the burden of this informal care is also being increasingly demonstrated and recognized. In light of the projected increase in the prevalence of dementia, it is crucial to further investigate the role and impact of informal care in dementia. This thesis aims to contribute to the knowledge in this area. The central aim of this thesis is to investigate the perseverance time (defined in 1.3) of informal carers of persons with dementia living at home Dementia and caregiving Dementia has a profound effect on the daily lives of persons with dementia and their informal carers. Informal care is a collective term for all non-professional care and support provided to a relative or friend. 2 This may vary from temporary practical support to full-time long-term care for an ill partner. A defining characteristic of informal care is that, in contrast to voluntary work, this care emanates from a personal and/or emotional tie with the person who is in need of help [Brouwer et al., 1999]. The decision whether and to what extent informal care is provided depends on numerous factors, including the skills, expertise, and available time of the informal carer, anticipated period of care need and material and immaterial appreciation, and mutual trust [Mundt et al., 1997; Marcén et al., 2011]. In addition to these factors, cultural influences also play a role in determining the amount of informal 2 Informal care can be defined as care provided to persons suffering from chronic illness or who have a disability or other long-term health care needs by someone outside a professional or formal network (Eurocarers, a European association working for carers: 12

13 General introduction care provided [Dilworth-Anderson et al., 2002; Pinquart et al., 2005; Donovan et al., 2011]. While one may think of the decision to provide informal care as a conscious choice, this may be perceived differently by those facing this choice or its effects. The perceived freedom of choice to provide informal care appears to decrease with the strength of the relationship with the person in need of care [Gitlin et al., 1999]. The availability of informal care is also affected by socio-demographic factors, such as size and composition of families, increased (female) participation in the labour market, and geographical dispersion of families [Colombo et al., 2011]. Trend studies suggest that the availability of informal care will decrease in the coming decades [Mesthenos et al., 2005; Gaymu et al., 2008; Sadiraj et al., 2009]. However, at the same time, the demand for informal care is likely to increase due to the ageing of populations and the increase in the number of the chronically ill [Ferri et al., 2005], whose demand for care is not likely to be matched by budgets for formal care. Therefore, policymakers are increasingly aware that it is pivotal to make optimal use of the available informal carers, and to facilitate their contribution through support programmes in local communities [Kodner et al., 2006; Vreugdenhil et al., 2011]. Also for persons with dementia, informal carers are typically important as providers and coordinators of care, especially in the advanced stages of the disease when these persons can no longer organize their own care. In the Netherlands, in 2007, two out of three persons with dementia were living at home [Sadiraj et al., 2009]. To a large extent, these persons with dementia were cared for by informal carers [Bakker et al., 2013]. Generally, this is also the preferred care setting for both persons with dementia and their carers [Grunfeld et al., 1997]. Nonetheless, the impact of informal care on the lives, health, and well-being of carers can be substantial [Raine et al., 2004]. Moreover, different carers may experience the burden of care differently even when performing similar tasks. Overburdening carers may result in losses of health and well-being [Bobinac et al., 2010; Bobinac et al, 2011; Schulz and Beach, 1999], and eventually result in an increased demand for formal care (including institutionalization). The progressive nature of dementia and the associated symptoms may add to this. Many informal carers have difficulties coping with the behavioural changes of the persons with dementia, and experience emotional stress [Peeters et al., 2007]. 13

14 Chapter 1 The study presented here of the perseverance time of informal carers of relatives with dementia living at home must be seen against this complex background. There is an increasing number of persons with dementia, and both the need and the desire to have relatives care for these persons in the home environment. At the same time, though, there is decreasing availability of formal and informal care, and providing care to persons with dementia can place a great burden on informal carers. This creates a difficult and pressing problem Perseverance time: origin, definition, and purpose In 2002, the concept of perseverance time originated from concerns regarding the increasing burden placed on informal carers, which were amplified by a growing lack of places in nursing homes [Dutch National Board of Health, 2002]. This raised questions about the extent to which informal carers could continue to provide care, and whether they would be able to articulate and predict their perseverance time. If it would be possible to elicit their perseverance time, this could help to prevent the overburdening of carers and subsequent crisis situations that might arise from this and result in emergency institutionalizations. This could be achieved by providing timely and appropriate support at home to persons with dementia and their informal carers, based on the carers estimations of perseverance time. We defined the concept of perseverance time as the period of time that informal carers expect to be able to continue performing their care tasks for their relative with dementia; the length of this period of time is influenced by a combination of factors. A first step in developing an instrument for measuring perseverance time was the investigation into whether informal carers are able to understand and relate to the concept of perseverance time. During interviews in panel sessions with about 30 informal carers of persons with dementia (which were held within the context of the Dutch National Dementia Programme ), carers were asked about persevering with their care tasks. This question resulted in a diversity of answers regarding their ability to persevere with this care, and the 14

15 General introduction impression that informal carers thought the question about perseverance time is recognizable [Kraijo, 2006]. In this thesis, we will therefore introduce and evaluate a measure of perseverance time, which intends to quantify the length of time that informal carers expect to be able to continue performing their current care tasks. This measure thus also provides an indication of the end of the informal caregiving period. The perseverance time measure was also developed to be useful in the daily practice of caring for persons with dementia. For instance, it could be useful for having timely discussions between formal care providers and informal carers about the decision on when to end informal care in order to avoid negative consequences for informal carers, and facilitate more optimal use of their inputs in the care for their relative with dementia. To this end, the perseverance time measure is operationalized in a very direct fashion by asking informal carers of persons with dementia the following question: If the informal care situation stays as it is now, how long will you be able to cope with the care? 3 The perseverance time of informal carers of persons with dementia living at home is the subject of study in this thesis, also in relation to the actual end of caring (that is, the institutionalization of the person with dementia). The overall research question is to explore the feasibility, validity, and added value of perseverance time, both as a concept and as a measure within the context of decision making in dementia care. Before we began our main study, we tested both the concept and the measure of perseverance time in a pilot with ten informal carers of persons with dementia living at home. We asked these carers to complete a pilot questionnaire for the longitudinal study. This contained the perseverance time question as well as a range of other questions, based on previous research in the field of informal care [e.g. Van Exel et al., 2004; Brouwer et al., 2006]. In the pilot, the perseverance time measure (including the answer categories) proved to be both understandable 3 As will be discussed more extensively in the following chapters, informal carers are then offered a number of answer categories and can select the one that applies best to their situation. 15

16 Chapter 1 and relevant. This thesis will present the results of the subsequent studies into perseverance time Research questions and structure of the thesis To meet the overall aim of this thesis, we will address the following research questions: 1. What is the feasibility and convergent validity of perseverance time? 2. Which characteristics of the informal carer, the person with dementia, and the care situation are associated with perseverance time? (content validity) 3. To what extent is perseverance time indicative of observed perseverance time? (predictive validity) 4. Can different profiles of caregiving be distinguished, and how do these relate to perseverance time? 5. How do spouses experience the decision to place their partner with dementia in a nursing home? 6. How is the timing of placing persons with dementia in nursing homes related to the perseverance time of their informal carers? To address these questions, a longitudinal study was designed in which 223 informal carers for persons with dementia from the Gooi and Vechtstreek region in the Netherlands were followed for a period of two years. Ethical approval for this study was obtained from the medical ethics committee of University Medical Centre Utrecht (protocol number /C; 26 July 2007). Figure 1 depicts the possible developments of caregiving situations included in the sample during the two-year follow-up study, and relates them to the different research questions and chapters. 16

17 General introduction Figure 1. Flow chart sample development related to chapters and research questions of this thesis. t = 0 At home At home t = 1 At home Admitted t = 2 At home Admitted Chapter Research questions (1 and 2) (3) (4) (5) (6) Legend: = Quantitative study = Qualitative study In research question 1, we addressed the feasibility and the convergent validity of the perseverance time measure. At the start of the two-year follow-up study (t = 0), we investigated whether participants were able to respond to the measure, and how their indicated perseverance time was associated with a number of instruments measuring caregiver burden and well-being. The results of this study are reported in Chapter 2. In research question 2, we addressed the content validity of the perseverance time measure by exploring associations with characteristics of the informal carer, the person with dementia, and the care situation. The results of these investigations are reported in Chapter 2. In research question 3, we explored the predictive validity of perseverance time by looking at whether perseverance time was indicative of observed 17

18 Chapter 1 perseverance time during the two-year follow-up. In a longitudinal cohort study, we use multiple questionnaires to investigate how the care situations of persons with dementia developed over time; which characteristics of informal carers, persons with dementia, and care situations were associated with the person with dementia living at home at t = 1 or t = 2 (i.e. observed perseverance); how the perseverance time of carers developed over time; and whether reported perseverance time was indicative of the observed timing of admissions. The results are reported in Chapter 3. In research question 4, we investigated how informal carers experienced their caregiving situation, identified different caregiver profiles, and related these to perseverance time. The results are presented in Chapter 4. In research question 5, we looked at how spouse evaluated the decision to place their partner in a nursing home. We interviewed them about their experiences with regard to the observed end of their perseverance time and explored with them whether the admission took place at the appropriate moment. The results are presented in Chapter 5. In research question 6, we investigated how the timing of admission to a nursing home related to the perseverance time of their informal carer. We did so by seeking insight into the caregiving situation before and after the admission to a nursing home, with particular attention to differences between informal carers living at home with their relative with dementia and informal carers living apart from them. These results are reported in Chapter 6. Figure 2 shows the sample we used to answer the subsequent research questions. A sample of 223 informal carers caring for a person with dementia living at home were included at baseline (t = 0). Over the course of the 2-year follow-up, 25 dropped out, 102 persons with dementia had been admitted to a nursing home, and 52 had died. After 1 year, 74 persons with dementia were still living at home; after 2 years, this was 44 persons. 18

19 General introduction Figure 2. Development of care situations during the two-year follow-up t=0 Included respondents (n=223) Study sample (n=198; 88.8%) Dropped out (n=25; 11.2%) t=1 At home (n=74; 37.4%) Admitted to a nursing home (n=82; 41.4%) Deceased (n=42; 21.2%) t=2 At home (n=44; 59.5%) Admitted to a nursing home (n=20; 27.0%) Deceased (n=10; 13.5%) overall At home (n=44; 22.2%) Admitted to a nursing home (n=102; 51.5%) Deceased (n=52; 26.3%) Finally, in Chapter 7 we discuss the findings from the different studies in relation to each other and to current literature. We also draw some conclusions regarding the feasibility, validity, and added value of perseverance time, both as a concept and a measure within the context of decision making in dementia care. 19

20

21 Chapter 2 The perseverance time of informal carers of persons with dementia: validation of a new concept and measure to initiate transition of care at home to nursing home care Chapter 2 is based on: Kraijo, H., Brouwer, W., de Leeuw, R., Schrijvers, G., van Exel, J. (2014). The perseverance time of informal carers of dementia patients: validation of a new measure to initiate transition of care at home to nursing home care. Journal of Alzheimer s Disease. 40:

22 Chapter 2 Flow chart related to Chapter 2 t = 0 At home At home t = 1 At home Admitted t = 2 At home Admitted Chapter Research questions: 1. What is the feasibility and convergent validity of perseverance time? 2. Which characteristics of the informal carer, the person with dementia, and the care situation are associated with perseverance time? (content validity) 22

23 Validation perseverance time ABSTRACT Background Health care systems aim to involve as much informal care as possible and persons with dementia prefer to stay home as long as they can. In this context, perseverance time - the period of time that informal carers expect to be able to continue performing their care tasks for their relative with dementia - is an important concept. Objective The aim of this study was to introduce the concept and measure of perseverance time and validate it in a sample of informal carers of persons with dementia living at home. Methods Data were collected from 223 informal carers of persons with dementia. Convergent validity was assessed by looking at associations of perseverance time with validated instruments for measuring subjective burden (CSI, CarerQol- 7D and SRB) and happiness (CarerQol-VAS). Content validity was evaluated by performing multivariate correlations between perseverance time and characteristics of persons with dementia, informal carers and care situations. Results Correlation coefficients between perseverance time measure and the measures of burden CSI, SRB, and CarerQol-VAS were -0.46, and 0.23 (p<0.01), respectively. Health of the person with dementia, informal carer living apart from the person with dementia, and male gender of informal carer were positively associated with perseverance time; need for supervision, intensity of informal care provision, and reductions in working hours and hobbies in order to be able to provide care negatively. Conclusions Perseverance time is helpful in monitoring need for support and planning the transition of care from home to nursing home. This study provides a first indication of its validity, but replication is necessary. 23

24 Chapter 2 BACKGROUND Informal care is the care and support provided to persons with dementia by persons from their social environment, normally in a non-professional or noncommercial capacity. This can vary from temporary practical support to full time care for an ill partner. In most countries informal care constitutes a large part of the total care provided to persons with dementia, especially those with chronic illnesses, disability, and other (aging-related) long lasting health problems or care needs. Increasingly, the importance and impact of informal care is recognized, not only for persons with dementia and carers but also for the health care sector. Given the rising pressure on health care budgets and the desire of persons with dementia to stay at home as long as possible, increasing the involvement of informal care has become an important policy objective in many health care systems. Dementia is a good example in this context, in particular because the number of persons with dementia is expected to double in the coming 20 years [Ferri et al., 2005]. When devising policies to increase the involvement of informal care, the positive effect of reducing the need for formal care must be balanced with potential negative effects on informal carers. This balance can, and increasingly is, influenced by support programs for which there is an apparent need amongst informal carers [e.g. Peeters et al., 2010; Kraijo et al., 2012; Van Exel et al., 2006]. Many such programs have been developed and evaluated in terms of their effectiveness and efficiency [e.g. Smits et al., 2007; Vernooij-Dassen et al., 2000 and 2004; Acton et al., 2001; Cooper et al., 2007; Spijker et al., 2009; Callahan et al., 2011; Andrén et al., 2008; Grossfeld-Schmitz et al., 2010]. Nonetheless, the crucial question that remains is how long the informal carers of persons with dementia can provide care in a sustainable fashion. This question is becoming more important now that trend studies suggest that while the demand for informal care is expected to increase together with the prevalence of dementia, [Ferri et al., 2005] the supply of informal care is expected to decrease in coming decades [Mesthenos et al., 2005; Gaymu et al., 2008; Sadiraj et al., 2009]. Important reasons for this include changes in the average size and composition of families as well as trends of increasing (female) participation in the labour market, geographical dispersion of families, and individualisation in many societies [Agree et al., 2009]. It is unlikely that 24

25 Validation perseverance time the formal health care sector can fully accommodate this increase in demand for dementia care. Hence, it need not surprise that in many countries seek the reliance on informal care will rise. In this context, it must be recognized that the objective burden (i.e., the tasks performed and the amount of time spent on these tasks) and the subjective burden (i.e., the strain perceived from performing these tasks) of informal care can be substantial [Brouwer et al., 2004; De Vugt et al., 2006]. Dementia is an illustrative example of an illness in which informal carers may experience considerable burden due to the prolonged and intense character of the informal care situation [Clyburn et al., 2000; Razani et al., 2007; Lilly et al., 2011; Annerstedt et al., 2000; Maslach et al., 1981; Almberg et al., 1997; Yilmaz et al., 2009]. Investigating how long informal carers of persons with dementia can be expected to continue providing care in a sustainable way, then becomes an important issue. For instance, the objective and subjective burden of informal care, and the health of the informal carer, and the person with dementia, appear to be important determinants of nursing home admissions, [Luppa et al., 2008; Gaugler et al., 2009; Coehlo et al., 2007] and thus for how long informal carers can reasonably continue providing informal care. In the context of dementia it is also important to consider the progressive nature of the illness and, like the person with dementia, the increasingly higher age of informal carers. Here we propose and validate a measure that directly asks informal carers how long they expect to be able to persevere with the current informal care, using the concept of perseverance time (PT). This measure can be used to determine the capacity of informal carers to continue care, particularly in the context of chronic illnesses. If informal carers can give a reasonable indication of how long they will be able to persevere with the care, then any necessary support could be offered more timely and tailor-made, admission to a nursing home could be better planned, and crisis situations more often prevented. Thus, such a measure could help getting informal carers optimally involved in the total care for persons with dementia. We tested the concept and measure of PT among Dutch informal carers of persons with dementia because of the chronic and progressive nature of the illness and the associated importance of timely interventions. The concept of PT was operationalized by asking informal carers of persons with dementia the following question: 25

26 Chapter 2 If the informal care situation stays as it is now, how long will you be able to cope with the care? This study concerns a first investigation of the added value of this concept for research and policy making, and therewith for informal carers. The primary aim of this study is to gather insight into the feasibility and validity of perseverance time. METHODS Research population The informal carers participating in this study were recruited between September 2007 and March 2008, in co-operation with the assessment agency of the Dutch Exceptional Medical Expenses Act in the Gooi and Vechtstreek region, the Netherlands. There is no formal registration of informal carers in the Netherlands, but regional assessment agencies have a registry of diagnosed persons with dementia living at home who receive formal help. The assessment agency sent a letter to the home address of all the persons in their registry diagnosed with dementia, directed To the primary informal carer of [name person with dementia]. The letter explained the purpose of our study and why the assessment agency supported the study by sending out this letter. In addition, the letter explained that their decision to participate in the study was voluntary and would not affect formal care provision to their relative with dementia in any way, that anonymity of data from questionnaires returned was guaranteed (and how), and that we would assume that by returning the questionnaire they gave permission to use the data they provided for the purpose of this study (as described in the letter). Attached to the letter were a questionnaire and a stamped return envelope, with the address of the assessment agency. After four and eight weeks a reminder was sent. The investigators periodically received bundles of completed questionnaires from the assessment agency. Therefore, the information available for this study was the data provided by informal carers through our questionnaire, exclusive of identifying information of respondents (i.e., their names and addresses) and persons with dementia (i.e., data from the registry of the assessment agency). 26

27 Validation perseverance time Measuring instruments The intake questionnaire for the longitudinal study was based on earlier research among informal carers [Van Exel et al., 2004; Brouwer et al., 2006; Al-Janabi et al., 2010] and consisted of a comprehensive set of questions about the informal carer, the person with dementia and the informal care situation (see table 1). Beside the objective burden in terms of duration and intensity of the informal care, questions were also asked about the consequences that informal carers experience in giving the informal care to their relatives with dementia and what their need for support is. In order to measure the health of the persons with dementia and the informal carers, use was made of a visual analogue scale (VAS) upon which informal carers could indicate how they experience their health and that of their relative with dementia on a scale that runs from 0, worst conceivable health to 10, best conceivable health. In addition, informal carers indicated whether the persons with dementia had co-morbidities (no/yes) and, if so, whether they thought these were mild, moderate or severe. In order to measure the care dependency, measurements were taken with a VAS that runs from 0, fully self-sufficient to 10, fully dependent. In order to measure the subjective burden, use was made of three validated instruments, the Caregiver Strain Index (CSI) [Robinson, 1983], Self-Rated Burden (SRB) [Van Exel et al., 2004], and the CarerQol [Brouwer et al., 2006; Hoefman et al., 2011; Hoefman et al., 2011]. The CSI consists of 13 items that refer to problems informal carers can experience (see figure 1) and has a simple sum score of 0, no burden, to 13, problems in all 13 items. A score of 7 or higher is defined as substantial burden. The SRB concerns a VAS on which informal carers indicate how burdensome they experience the informal care; the scale runs from 0, not at all straining, to 10, much too straining. The CarerQol-7D, the first part of the CarerQol, consists of seven dimensions (five negative and two positive), registering the informal care experience on a three point scale (see figure 2). The CarerQol-VAS is a valuation component that measures quality of life with a VAS on which informal carers can indicate their happiness; the scale runs from 0 (i.e., completely unhappy) to 10 (i.e., completely happy). Furthermore, the question about PT was included. Informal carers were asked If the informal care situation stays as it is now, how long will you be able to cope with the care?, with answer categories: less than one week; more than one 27

28 Chapter 2 week, but less than one month; more than one month, but less than six months; more than six months, but less than one year; more than one year, but less than two years; more than two years. PT in months is determined by taking the middle of the category in the first five answer categories (for example 3.5 months for the category more than one month, but less than 6 months ) and was arbitrarily set at 30 months in the (open-ended) sixth category more than two years. To identify the need for support, informal carers were asked if they had need for: support with informal care tasks; emotional support; and/or respite care. Statistical analyses The convergent validity of PT, that is, the extent to which PT is related to constructs to which it theoretically should be, was assessed by looking at bivariate associations between PT and already validated outcome measures for subjective burden (CSI, SRB, CarerQol-7D) and happiness (CarerQol-VAS). We expected thereby that PT is statistically significantly and negatively associated with subjective burden (CSI, SRB, and the five negative dimensions of the CarerQol-7D) and positively with the two positive dimensions of the CarerQol- 7D and happiness (CarerQol-VAS). Correlations of size smaller than 0.1 were considered as trivial; as small; as moderate; as high; as very high; >0.9 as nearly perfect [Hopkins, 2010]. The content validity of PT was evaluated by performing binary logistic regression analyses between PT (dichotomised at three levels: >6 months; >1 year; >2 years) and characteristics of informal carers, persons with dementia, and the informal care situation. For all continuous variables linear as well as non-linear associations were tested. We expected thereby that PT is statistically significantly and negatively associated with characteristics that represent a more demanding informal care situation. Statistical analyses were conducted with SPSS

29 Validation perseverance time RESULTS Of the 602 questionnaires sent 292 envelopes were returned (gross response rate 49%). Non-participation was caused by administrative issues with the addresses used, like for instance undeliverable envelopes because of moving house. Other reasons mentioned included: relatives admitted to a nursing home, deceased, or receives no informal care, and carer regards participation too burdensome. After further examination of the 292 responses, 69 of the returned questionnaires turned out to be inadmissible for the study because of empty envelopes, (largely) incomplete questionnaires, no case of dementia, or questionnaires (retrospectively) completed by carers of persons with dementia already admitted to a nursing home or deceased. Consequently, 223 informal carers were included in the study (net response rate 37%; which compares well to previous studies in this population e.g. [Van Exel et al., 2004; Van Exel 2006]). Table 1 shows the characteristics of the included informal carers and the persons with dementia they take care of. The average age of the persons with dementia was 81 years (range 51-97), 54% were women and 62% had a partner. The health of the person with dementia was valued by informal carers with a mark of 5.8 (on a scale of 0-10). Informal carers had the feeling that something was not right with the relative with dementia on average two years prior to the final diagnosis of dementia. In case of three quarters of the person with dementia there was co-morbidity. The care dependency of persons with dementia was considerable, valued at 7.0 (on a scale of 0-10). A little over half of the persons with dementia could easily be left alone for a few hours, 23% for no more than one hour, while 22% needed continuous supervision. The informal carers were on average 66 years of age (range 29-93) and 66% were women. More than half of the informal carers (54%) were the partner of the relative with dementia, in the remaining cases they usually took care of their parent (in law). In 57% of the cases the informal carer and the dementia person with dementia lived in the same house. In addition to the responsibility for the person with dementia 11% of the informal carers had children living at home and 30% a paid job. Health and happiness were valued respectively at 7.3 and 6.3 (on a scale of 0-10). The duration of the informal care was on average 3.1 years, and the intensity amounted to on average 38 hours per week spread over on average 5 days per week (see table 2). Almost three quarters of the persons with dementia 29

30 Chapter 2 received additional professional care at home, 62% made use of day care and 24% also received help from other informal carers. Of the informal carers who were employed, 25% had decided to work less to be able to (continue to) provide informal care. In addition, 40% of the informal carers had given up a hobby and 40% of those who did voluntary work decided to reduce this commitment. Table 1 Sample characteristics (n=223) Characteristics N (%) Mean SD Range Persons with dementia Age Years Gender Female 120 (53.8) Male 103 (46.2) Marital status Married/having a partner 139 (62.3) Single 84 (37.7) Health status (VAS 0-10) VAS (0-10) Co-morbidities No 49 (22.0) Mild 44 (19.7) Moderate 86 (38.6) Severe 44 (19.7) Supervision Needs constant supervision 50 (22.4) Can be left alone for one hour at 51 (22.9) the very most Can be left alone for a couple of 122 (54.7) hours easily Care dependence VAS (0-10) Time since suspicion of Years dementia Time since diagnosis of dementia Years Informal carers Age Years Gender Female 146 (65.5) Male 77 (34.5) Marital status Married/having a partner 187 (83.9) Single 36 (16.1) Children at home No 198 (88.8) Yes 25 (11.2) Education level Low 28 (12.6) Middle 131 (58.7) High 64 (28.7) Employed No 155 (69.5) Yes 68 (30.5) Health status VAS (0-10) Well-being (CarerQol) VAS (0-10)

31 Validation perseverance time Characteristics N (%) Mean SD Range Relationship Person with dementia is Partner 121 (54.3) Parent (in-law) 86 (38.6) Other (family) relationship 16 (7.2) Living together No 95 (42.6) Yes 128 (57.4) Table 2 Burden of the care giving situation (n=223) N (%) Mean SD Range Objective burden Duration of informal care giving Years Intensity of informal care giving Days per week Hours per week Formal care at home Yes; Hours per week 163 (73.1) Formal day-care away from home Yes 139 (62.3) Support by other informal carers Yes; hours per week 118 (52.9) Private home help Yes; hours per week 65 (29.1) Adjustments - Adjusted working hours Yes if working 17 (25.0) - Reduced volunteer work Yes if they do 22 (43.1) - Abandoned hobbies Yes if they had one 73 (39.9) Subjective burden Caregiver Strain Index (CSI) Score (0-13) substantial strain % CSI score (66.4) Self-Rated Burden (SRB) VAS Desire for additional support Help with care giving activities Yes 101 (45.3) Emotional support Yes 38 (17.0) Respite Yes 77 (34.5) None Yes 35 (15.7) The burden experienced was 7.7 on the CSI and 5.8 on the SRB. Two thirds (66.4%) of the informal carers felt overburdened (CSI score 7); of the partners 85% felt overburdened, of the informal carers who lived in the house with the relative with dementia 84% felt overburdened. 31

32 Chapter 2 The scores on the items of the CSI (figure 1) shows that 87% of the informal carers indicate that: it is painful to see that he/she has become a different person (item 10), and that 50% or more of the informal carers indicated 9 of the 13 items as a problem area, especially those items that refer to emotional burden [Acton et al., 2001; Cooper et al., 2007; Spijker et al., 2009] and the effect on daily life (Van Exel et al., 2006; Smits et al., 2007, Vernooij-Dassen et al., 2000 and 2004; Callahan et al., 2011; Andrén et al., 2008]. The scores on the seven dimensions of the CarerQol (figure 2) show that many informal carers experience some to a lot of problems in the relationship with the person with dementia, the combining of daily activities with providing informal care and with their own physical and mental health. Nevertheless, the largest proportion of informal carers experience satisfaction in caring for the relative with dementia (88%) and support from the immediate circle of persons around the informal carer. Informal carers of persons with dementia experience little financial problems as a result of providing informal care, as also evident from CSI item

33 Validation perseverance time Figure 1 Problems experienced with care giving (CSI) and association with PT (1) Sleep is disturbed * (2) It is inconvenient (time, travel) * (3) It is a physical strain * (4) It is confining (restricts free time) * (5) There have been family adjustments * (6) There have been changes in personal plans * (7) There have been other demands on time (8) There have been emotional adjustments * (9) Some behaviour is upsetting * (10) Her/his change from former self is upsetting (11) There have been work adjustments * (12) Feeling completely overwhelmed * (13) It is a financial strain *p<.001 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Yes No Figure 2 Problems of care giving situation (CarerQol-7D) and association with PT (1) Fulfillment with carrying out my care tasks (+) * (2) Relational problems with care recipient (-) * (3) Problems with my own mental health (-) * (4) Problems combining care tasks with daily activities (-) * (5) Financial problems (-) (6) Support with carrying out my care tasks, when I need it (+) (7) Problems with my own physical health (-) * *P<.001 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% no some a lot of 33

34 Chapter 2 The PT stated by informal carers was considerable despite the high burden experienced (figure 3). The average PT in months was 18.3 (SD 11.0). A little over four out of ten informal carers indicated they would be able to cope with the informal care as it was at the time of completing the questionnaire for longer than two years. However, approximately one out of five informal carers did not see themselves coping for longer than six months with the current informal care situation, five percent even no longer than one month. Figure 3 Perseverance time 50% 40% 42% 30% 20% 20% 19% 14% 10% 5% 0% 0% Less than a week More than a week, but less than a month More than a month, but less than six months More than six months, but less than a year More than a year, but less than two years More than two years Of all informal carers 84% indicated to have a need for additional support to be able to persevere longer with the informal care task, whereby especially practical support (45%) and respite (35%) were mentioned, while 16% indicated not to have any need for additional support. 34

35 Validation perseverance time In table 3 the associations are presented between PT, subjective burden, and happiness. The average scores in the different categories of PT as well as the correlations show that lower subjective burden and higher care-related quality of life are associated with longer PT. In addition, PT is significantly associated with 10 of the 13 items of the CSI (figure 1), and five of the seven dimensions of the CarerQol (figure 2). The association with happiness (CarerQol-VAS) is less strong and seems to exist especially at lower PT-scores. These results show that the convergent validity of PT can be classified as moderate with CSI, good with SRB, but poor with happiness. Table 3 Mean scores of outcome measures CSI, SRB, and CarerQol-VAS according to perseverance time category and correlations with perseverance time in months CSI score SRB score CarerQol VAS score Perseverance time category Less than six months More than six months, but less than a year More than a year, but less than two years 7.5 ** 5.7 ** 6.6 * More than two years Perseverance time in months Spearman correlation coefficient -.46 ** -.63 **.22 * *p<.01; **p<

36 Chapter 2 Table 4 presents the statistically significant (p<.10) correlations between PT (in months) and the characteristics of persons with dementia, informal carers and the informal care situation from table 1 and 2. PT was positively associated with masculine gender, health and happiness of the informal carer, and having children living at home. PT was negatively associated with care dependence of the persons with dementia, age of the carer, being partner of the relative with dementia, living in the same house as the relative with dementia, and all measures of objective and subjective burden. These findings were largely confirmed by the multivariate analyses. 36

37 Validation perseverance time Table 4 Statistically significant associations of perseverance time (PT) with characteristics of persons with dementia, informal carers, and care situation. Characteristics N PT (months) Persons with dementia Oneway Anova (p < 0.10) Care dependence > Informal carers Gender Female Male Age < Children at home No Yes Health status > Well-being > Relationship Relative with dementia is partner No Yes Living together No Yes Objective burden Intensity of informal care giving (days/week) Intensity of informal care giving (hours/week) Adjusted working hours (if working) Abandoned hobbies (if they had one) 5 days/week > 5 days/week hour/week > 32 hours/week Not adjusted Less or stopped working No Yes Subjective burden Caregiver Strain Index (CSI) > Self-Rated burden (SRB) >

38 Chapter 2 Table 5 presents the results of three binominal models with PT as dependent variable (dichotomized as: more than six months (yes/no); more than one year (yes/no); more than two years (yes/no)). Explaining variables were the characteristics of persons with dementia, informal carers, and the informal care situation presented in tables 1 and 2. The results of these analyses however show that different categories of PT were associated with different sets of characteristics. First, a PT of more than six months was associated positively with the health of the person with dementia, the level of education of the informal carer, and with the degree of satisfaction; it associated negatively with the intensity of the informal care, whether the informal carer has a partner, and whether the informal care comes at the expense of sacrificing hobbies. Second, a PT of more than one year depended a great deal on preceding variables, but also for example on the masculine gender of the informal carer and if the person with dementia is not a single parent (in law) of the informal carer (positive). Finally, a PT of more than two years (i.e., no limit indicated to PT) gives a slightly deviating picture and was associated especially with masculine gender of the informal carer, person with dementia being the married/living together, parent (in law) of the informal carer (positive), and giving up of hobbies (negative). Fulfilment from care giving increased the odds of a PT of more than two years. 38

39 Validation perseverance time Table 5 Characteristics Binary logistic models for perseverance time Persons with dementia Perseverance time >6 months >1 year >2 years O.R. p O.R. p O.R. p Age Years Gender Male Supervision Can be left alone (one hour at the most) Needs constant supervision Health status VAS (0-10) 1.45 *** 1.23 ** 1.06 Informal carers Age Years Gender Male ** 2.75 ** Marital status Married/having a partner 5.69 ** 2.49 * 1.42 Children at home Yes Education level Middle * 2.46 High 5.08 * Employed Yes Health status VAS (0-10) 0.09 * Squared 1.19 * Relationship Relative with dementia is Partner Parent (in-law), single Parent (in-law), Married/ having a partner * 7.26 ** Objective burden Duration of informal care giving (years) Years Intensity of informal care giving Hours per week 0.91 *** 0.95 ** 0.98 Squared 1.00 *** 1.00 ** 1.00 Formal care at home Yes Formal day-care away from home Yes Support from other informal carers Yes Support from private home help Yes Carer adjusted working hours Yes Carer reduced volunteer work Yes ** 0.62 Carer abandoned hobbies Yes 0.31 ** 0.31 *** 0.32 *** Carer has some fulfilment from care 3.29 * 4.65 *** 2.54 giving Carer has a lot of fulfilment from care 8.26 *** 7.84 *** 4.51 ** giving Constant Nagelkerke R Percentage correctly classified ***p<0.01; **p<0.05; *p<

40 Chapter 2 DISCUSSION This study introduced the concept of perseverance time (PT), defined as the period of time that informal carers expect to be able to continue performing their care tasks for their relative with dementia, and operationalized in a very direct fashion by asking informal carers how long they able to cope with the current care? This concept and measure may be useful in determining the optimal involvement of informal carers in the total care for persons with dementia, and in facilitating a timely and smooth (perhaps phased) transition of the care at home from informal carers to nursing home care. The necessity to attempt involving informal care optimally is emphasised by the fact that the growth of the nursing home capacity is not keeping pace with the growth of the number of persons with dementia [Peeters et al., 2010]. Making PT explicit could thus help in offering timely and better support in the home environment so that informal carers are able to persevere with the care for longer (assuming that postponing the admission of the person with dementia is desired by the informal carer), and initiating the mostly inevitable transition to nursing home care at a time that is suitable for the informal carer and the person with dementia. PT is a new concept and therefore no previous data are available for comparison. In this study we found that the PT measure is understandable for informal carers and that they are capable (and willing) to indicate how long they are able to continue current care. This confirms previous findings in an interview setting [Kraijo et al., 2012] and can be viewed as supporting the feasibility of PT in this context. We measured PT in the circumstance when the care giving situation stays as it is now. Without this addition the question would be meaningless (and even painful) because dementia has a progressive course, and carers often are the (also aged) partners of the relative with dementia. Health care professionals must, therefore, understand the answer to the PT question against this background. In principle, it can be expected that the actual PT will usually be shorter than the indicated PT, as the care situation is likely to change (to the worse) and caring will become more straining than it is at the moment of PT measurement. We studied the convergent validity of PT by investigating associations with validated measures for caregiver burden, happiness and care-related quality of life. Two measures of subjective burden (CSI and SRB) were associated 40

41 Validation perseverance time significantly with PT. A reason for the stronger correlation of PT with the SRB than with the CSI may relate to the fact that CSI provides an unweighted sum score of perceived problems in caring, while the SRB is an overall (subjectively weighted) assessment of the care situation, in which positive experiences may also be included. Informal carers possibly also included and weighed these different elements to come to an overall assessment in answering the question of PT. The chosen outcome measure for happiness (CarerQol-VAS) associated significantly with PT but less strongly than with the measures for subjective burden. An explanation for this can be that happiness is a much broader concept, whereby more life domains than only the informal care situation are taken into consideration. The content validity of PT appeared fair to good for the categories more than half a year and more than one year and declined for a PT of more than two years. Examining determinants of PT showed a marked resemblance with known determinants of subjective burden: the health status of the person with dementia and the informal carer and the objective burden of the informal care situation [Acton et al., 2001; Lilly et al., 2011; Hoefman et al., 2011; Van Exel et al., 2005]. Nevertheless, it is important to note that PT is conceptually different from subjective burden. Both PT and subjective burden measures ask carers to consider the positive and negative aspects of caring (although, with a few exceptions, [Van Exel 2004; Al-Janabi et al., 2010] most burden measures focus on the negative aspects only). However, on top of that, PT asks carers to assess how long they can continue functioning at the current level of burden. Therefore, PT aims to provide more than an indication of the balance between care demands and caring capacity at one particular point in time. Rather, in order to determine the future need for support, it aims to look forward in time and to assess perseverance in a carer-centred manner. Regular assessment of PT could therefore be helpful in signalling carers need for (extra) support to enable the care at home to continue, or to start planning the transition from care at home to nursing home care. We found men to report a longer PT, less burden and higher happiness than women in this study. These findings resemble those from earlier research [Almberg et al., 1997; Yilmaz et al., 2009; Yee et al., 2000; Gallicchio et al., 2002; Akpinar et al., 2011]. A pro-active attitude by professionals may thus be necessary to offer timely support for female carers. However, at this stage it is first of all important to further study the validity of PT, also in longitudinal studies, in order to determine how stated PT related to actual PT. 41

42 Chapter 2 Contrary to what one might expect, informal carers who had reduced working time still indicated a lower PT than informal carers who did not. Similar effects were also found in reduction of other forms of social participation, such as voluntary work and no longer having time for hobbies. Adjustment of work and social participation therefore may be rather a signal for need of extra support, than an outlook for increasing PT. The interaction between providing informal care and work and social participation appears an important area for further research. Although the first results regarding the feasibility and validity of the concept of PT are encouraging, caution is warranted given a number of limitations of this study. The sample of this study was small and possibly selective, although there is no reference data for a representative sample of carers (of persons with dementia or others). In any case, the level of burden in the sample was considerable when compared to other studies using the same measures (e.g., higher than in case of children with craniofacial malformations [Payakachat et al., 2011], patients with rheumatoid arthritis [Brouwer et al., 2004] and stroke patients [Van Exel et al., 2005], similar to patients with Muscular Dystrophy [Pangalila et al., 2012]) and, like in other studies [Schneider et al., 1999; Campbell et al., 2008], particularly high among persons providing care to their partner with dementia. Furthermore, the PT question had six answer categories, of which the last one (i.e., more than two years ) was open-ended. Given the answering pattern (see Figure 3), adjustment of the answer categories should be considered. The lowest two categories have hardly been selected by respondents. It may of course be that carers with such low PT are less likely to participate in a survey, but that these categories do have significance when used in the field by case managers, for instance. In addition, the mean PT value in months derived from these categorical answers should be interpreted with some caution because it is particularly dependent on the value chosen for the last category (i.e., more than two years ; mean PT was 18.3 months if 2.5 years was chosen for this category, but 30.8 or 55.8 in case 5 or 10 years was chosen. All associations presented in Table 4 were also statistically significant for PT based on 5 and 10 years, except for adjusted working hours ). Future studies may consider asking respondents choosing this category to provide an indication of their PT. In addition, the sample of this cross-sectional study was limited in terms of numbers, scope, and geography. At the least, this affected the choice of statistical techniques 42

43 Validation perseverance time (and explains the reliance on dichotomization and logistic regression). Moreover, the potentially large group of informal carers of persons not formally diagnosed with dementia was not involved in this research. Larger, longitudinal studies are required to investigate whether our results can be generalised. Studying PT in other (chronic) disease areas would be valuable as well. CONCLUSION Concluding, perseverance time provides a direct way of investigating how long informal carers can continue providing informal care and can thus be helpful in signalling need for extra support or planning the transition from care at home to nursing home care. Recently, one of the health insurance companies in the Netherlands has added perseverance time to their monitoring toolkit for case managers in dementia care, exactly for this purpose. However, this first study is insufficient to claim feasibility or validity of the concept and more research is required to confirm these findings, also in informal carers of different patient populations, and to study the accuracy and policy relevance of estimated perseverance time in daily practice. 43

44

45 Chapter 3 The perseverance time of informal carers of relatives with dementia: results of a two year follow-up study Chapter 3 is based on: Kraijo, H., Brouwer, W., van Exel, J. Perseverance time of informal carers for relatives with dementia: results of a two year follow-up study. Submitted paper.

46 Chapter 3 Flow chart related to Chapter 3 t = 0 At home At home t = 1 At home Admitted t = 2 At home Admitted Chapter Research question: To what extent is perseverance time indicative of observed perseverance time? (predictive validity) 46

47 A two year follow-up study ABSTRACT Background In light of the projected increase of people with dementia in the next decades and the related demand for informal care, an important question is how much and how long informal carers can be expected to provide care in a sustainable way. This study aimed to investigate the perseverance time of informal carers for people with dementia. Methods A two year longitudinal cohort study was conducted. Data about the care situation, the impact of caregiving on carers and their need for support, and the anticipated and realized perseverance time was collected from informal carers of people with dementia living at home using questionnaires. The data were analysed using bivariate analyses. Results 223 carers of people with dementia were included in the study, of which 25 dropped out during follow-up. The results showed that after one year 74 of 198 patients were still living at home and after two years 44 of 198 patients. Variables associated with this outcome were identified. When informal carers anticipated their perseverance time was less than one year, it was indicative of actual perseverance time. Conclusions Perseverance time provides a fair indication of the expected end of informal care. Its accuracy appears best when carers indicate a limited rather than an unlimited perseverance time. Although more research is required to support these findings, perseverance time may be considered as a useful additional instrument in health policy and clinical practice for monitoring need for support and planning the transition of care from home to nursing home. 47

48 Chapter 3 BACKGROUND Informal care is the care and support provided to patients by persons from their social environment, normally in a non-professional and non-commercial capacity. The care can vary from temporary practical support to full time care for an ill partner [Kraijo et al., 2014]. Informal care is an important part of total care in many disease areas, especially in cases of chronic illness. One of the crucial questions regarding informal care is how long an informal carer is able to provide informal care in a sustainable fashion. This question is becoming more important now that trend studies suggest that the supply of informal care will decrease in coming decades, while at the same time the demand is growing [Mesthenos et al., 2005; Gaymu et al., 2008; Sadirai et al., 2009]. Important reasons for the declining supply of informal care include: changes in the average size and composition of families; increasing (female) participation in the labour market; increasing geographical dispersion of families, and increasing individualisation in society [Agree et al., 2009]. These social trends coincide with an expected increase in the demand for informal care due to an ageing population and an increase in the number of chronically ill patients. For example, in many countries the number of persons with dementia is expected to double over the next decades [Ferri et al., 2005]. For reasons of labour scarcity and limited health care budgets, it is unlikely that the formal health care sector can fully accommodate this increase in demand. Hence, many governments seek to increase the involvement of increasingly scarce informal carers. The potential for doing so is not unlimited, however, because the objective and subjective burden of informal care can be substantial. Dementia is an illustrative example of an illness in which informal carers may experience substantial burden, due to the prolonged and intense character of the informal care situation, but also the progressive nature of the illness and the usually relatively high age of carers. Many studies have shown that the impact of providing informal care to persons with dementia can be profound [Maslach et al., 1981; Almberg et al., 1997; Annerstedt et al., 2000; Razani et al., 2007; Yilmaz et al., 2009; Lilly et al., 2011]. Therefore, in order to know how much and how long informal carers can be expected to provide care in a sustainable way, it is important for policy makers to understand what determines carers perseverance time [Kraijo et al., 2014] and how carers can be supported to continue providing care and so help decrease the demand for formal health care and delay nursing home admission. 48

49 A two year follow-up study There is increasing research attention for informal care. For example, several studies have investigated the coping capacity and strategies of carers [Graham et al., 1997; Kneebone et al., 2003; Li et al., 2012] or interventions aimed at reducing burden and depression in carers [Acton et al., 2001; Garcia-Alberca et al., 2012], in order to identify factors that may help prolong the duration of caregiving. An important concept in this context is carer resilience [Ross et al., 2003; Gaugler et al., 2007; Coon, 2012; Windle et al., 2012]. Several studies have shown that informal carers can be assisted in coping with the demands of informal care, thus lowering their perceived burden [Annerstedt et al., 2000; Arai et al., 2002; Gaugler et al., 2007]. Other studies have looked at attitudes of informal carers regarding caregiving, respite care and institutionalisation [Peeters et al., 2010; Kraijo et al., 2012; Van Exel et al., 2007; Van Exel et al., 2006]. All this research has improved our understanding of the caregiving process for relatives with dementia [Penrod et al., 2007; Zabalegui et al., 2008; Connor et al., 2008]. Another important branch of research investigated the predictors of nursing home admission [Gaugler et al 2009; Luppa et al., 2010]. Predicting admissions in individual cases, however, remains difficult [Durme et al., 2012], while good timing of admissions is very important for different reasons, including that patients and informal carers generally prefer care at home for as long as possible [Grunfeld et al., 1997; Verbeek et al., 2012] and the increasing scarcity of nursing home capacity [Peeters et al., 2010]. Loeb [2005] argued that an important step in addressing perseverance of informal carers would be the development of an instrument capable of measuring that perseverance. Recently, such a measure was proposed and validated [Kraijo et al., 2014]. In that study, the concept of perseverance time (PT) was operationalized by asking informal carers of persons with dementia the following question: If the informal care situation stays as it is now, how long will you be able to cope with the care? The findings indicated that informal carers understood this line of questioning well and that PT was useful to provide an indication of the time they expect to be able to continue care in light of the care situation and the burden this entails. An instrument capable of measuring perseverance time may help policy makers and practitioners to support those carers who expect a short PT and can help in planning timely admissions, when unavoidable. 49

50 Chapter 3 In this Chapter, we report the results of a longitudinal study of anticipated and realized perseverance time of informal carers of persons with dementia. A sample of informal carers of persons with dementia described in [Kraijo et al., 2014] was followed during a two year period. We registered PT using the proposed instrument [Kraijo et al., 2014] next to a number of characteristics of persons with dementia, their informal carers and the caregiving situation. The aim of this study was to (i) investigate how care situations of persons with dementia developed over time, (ii) which informal carer, person with dementia and care situation characteristics were associated with the person with dementia living at home after one and two years, (iii) how PT of informal carers developed over time, and (iv) whether PT answers were indicative of actual admission to a nursing home. The structure of this Chapter is as follows. First, we describe the methods used. Then, we describe the results of our study. Finally, these results are discussed and conclusions are drawn METHODS Sample This study is a follow-up of the sample of informal carers of persons with dementia, described in Chapter 2. The informal carers participating in this study were recruited between September 2007 and March 2008, in co-operation with the assessment agency of the Dutch Exceptional Medical Expenses Act in the Gooi and Vechtstreek region, near Amsterdam, The Netherlands. There is no formal registration of informal carers in the Netherlands, but regional assessment agencies have a registry of diagnosed persons with dementia living at home receiving formal help, for instance home care. The assessment agency sent a letter to the home address of all the persons in their registry diagnosed with dementia, directed To the primary informal carer of [name person with dementia]. The letter explained the purpose of our study and why the assessment agency supported the study by sending out this letter. In addition, the letter explained that their decision to participate in the study was voluntary and would not affect formal care provision to their relative with dementia in any way, that anonymity of data from questionnaires returned was guaranteed (and how), and that we 50

51 A two year follow-up study would assume that by returning the questionnaire they gave permission to use the data they provided for the purpose of this study (as described in the letter). Attached to the letter were a questionnaire and a stamped return envelope, with the address of the assessment agency. After four and eight weeks a reminder was sent. The investigators periodically received bundles of completed questionnaires from the assessment agency. Therefore, the information available for this study was the data provided by informal carers through our questionnaire, exclusive of identifying information of respondents (i.e., their names and addresses) and persons with dementia (i.e., data from the registry of the assessment agency). Informal carers who agreed to participate in the study received a follow-up questionnaire one year (t=1) and if applicable- two years (t=2) after completing the first questionnaire (t=0). The data collection procedure at t=1 and t=2 was as described above for t=0. Measures The follow-up questionnaire was an abbreviated version of the baseline questionnaire used in [Kraijo et al., 2014], which consisted of a comprehensive set of questions about the informal carer, the person with dementia, and the informal care situation (e.g., objective and subjective burden of care, need for support, adjustments in work and other activities). This questionnaire was largely based on the imta valuation of informal care questionnaire (ivicq) [Hoefman et al., 2011] and was described in more detail elsewhere [Kraijo et al., 2014]. Some key outcome measures for this longitudinal study are highlighted below. In follow-up surveys, we reduced the length of the baseline questionnaire in order to promote response, and focussed on the key outcome measures for this study. The health status of persons with dementia and carers was measured using a visual analogue scale (VAS) ranging between 0 (labelled worst conceivable health ) and 10 ( best conceivable health ). Care dependency of the person with dementia was assessed using a VAS ranging between 0 (labelled fully selfsufficient ) and 10 ( fully care-dependent ). The subjective burden of care was assessed with two short and validated instruments: the Caregiver Strain Index (CSI) [Robinson, 1983] and Self-Rated Burden (SRB) [Van Exel et al., 2004]. The CSI consists of 13 items describing problems informal carers can experience. Respondents are asked to indicate 51

52 Chapter 3 whether they experience these problems (answer categories: no / yes) and a simple sum score is computed. This score ranges between 0, indicating no burden, and 13, indicating the carer experiences strain on all 13 problem areas. A CSI score of 7 or higher is defined as substantial burden.[sullivan, 2003] The SRB is a VAS on which informal carers are asked to indicate how burdensome they experience the informal care to be. The scale ranges between 0 (labelled not at all straining ) and 10 ( much too straining ).[Van Exel et al., 2004] Moreover, PT was assessed by asking informal carers: If the informal care situation stays as it is now, how long will you be able to cope with the care? ; with answer categories: less than a week; more than a week, but less than a month; more than a month, but less than six months; more than six months, but less than one year; more than one year, but less than two years; more than two years (see figure 2) [Kraijo et al., 2014]. PT in months was estimated by taking the centre value of a category (e.g., 9 months for the category more than six month, but less than one year ). For the (open-ended) fourth category more than two years, the value was arbitrarily set at 30 months. Statistical analyses Descriptive statistics of all variables are presented in mean and standard deviation for continuous variables and in percentages for categorical variables. Differences between sub-groups were tested using ANOVA in case of continuous variables and Chi-square in case of categorical variables. Differences between two points in time were tested using the paired sample T-Test. Statistical analyses were conducted with SPSS RESULTS Sample As described elsewhere Chapter 2, 223 informal carers were included in this longitudinal study at baseline. During the two-year follow-up 25 informal carers dropped out because of non-response (after reminders). At baseline (t=0), this subgroup of informal carers reported significantly higher burden of care (CSI score 7.9 vs. 6.5 (p<.05); SRB score 6.0 vs. 4.8 (p<.05)) and they were more often identified as being substantially strained (CSI score 7: 69% vs. 48%; 52

53 A two year follow-up study p<.05) than the informal carers retained for this follow-up study. Therefore, the sample for the longitudinal analysis presented here consisted of 198 informal carers of persons with dementia living at home at t=0 (Figure 1). At baseline, 42% of carers expected to persevere in caregiving (at least) throughout the twoyear follow-up period (Figure 2). Figure 1 Development of care situations during the two year follow-up t=0 Study sample (n=198; 88.8%) t=1 At home (n=74; 37.4%) Admitted to a nursing home (n=82; 41.4%) Deceased (n=42; 21.2%) t=2 At home (n=44; 59.5%) Admitted to a nursing home (n=20; 27.0%) Deceased (n=10; 13.5%) overall At home (n=44; 22.2%) Admitted to a nursing home (n=102; 51.5%) Deceased (n=52; 26.3%) 53

54 Chapter 3 Development of care situations Figure 1 shows how the 198 care situations developed throughout the two-year follow-up. After one year 74 persons with dementia (37.4%) still lived at home, while this reduced to 44 (22.2%) persons with dementia after two years. About half of the persons with dementia (n=102; 51.5%) was admitted to a nursing home during the follow-up period, the majority within one year from inclusion in this study, and about a quarter (n=52; 26.3%) had died. In this context it is relevant to note that persons were diagnosed with dementia on average 3.2 years (S.D. 2.4; range 1-16) before inclusion in our sample and that the survival period after diagnoses commonly varies between 3 and 9 years [Bianchetti et al., 2001; Wolfson et al., 2001]. Figure 2 Perseverance time at base line 50% 40% 42% 30% 20% 20% 19% 14% 10% 5% 0% 0% Less than a week More than a week, but less than a month More than a month, but less than six months More than six months, but less than a year More than a year, but less than two years More than two years Table 1 presents descriptive statistics of the characteristics of persons with dementia, their informal carers, and the caregiving situation. The average age of persons with dementia at baseline was 81 years (range 60-97) and about half were women; these values did not change considerably among persons with dementia retained during follow-up. 36% of persons with dementia were single and 33% lived alone; these percentages slightly decreased among those who were still living at home at t=1 and t=2. The average health 54

55 A two year follow-up study of the persons with dementia was valued at 5.8 (range 0-10), and co-morbidity was reported in 78% of persons with dementia; the proportion of persons with dementia without co-morbidities clearly declined over time in the person with dementia group still living at home. Almost half of the persons with dementia needed (constant) supervision and the average care dependence score was considerable at 7.0 (range 0-10). The average age of informal carers was 67 years (range 35-93), over half was aged 65 or more, and two out of three were women. A minority of the carers was single or had children under the age of 18 co-residing with them, 29% was employed; the proportion of carers with a job decreased considerably during follow-up among carers for persons with dementia still living at home. Informal carers rated their health at 7.3 (range 0-10) and their happiness at 6.4 (range 1-9). More than half of the carers (55%) were the partner of the relative with dementia, and 59% of the persons with dementia lived in the same house as the carer; both proportions clearly increased among those continuing to live at home during follow-up. Carers reported they had been providing informal care to the person with dementia for 3.2 years on average (range 0-7) and that their current task was intensive, taking up a substantial part of their time: 38.6 hours a week (range 1-126) spread over 4.8 days (range 1-7). At baseline, 74% of the persons with dementia received formal care at home, 63% received day-care away from home and about half received support from other informal carers than the primary carer (i.e., the respondent). During follow-up, the proportion of persons with dementia living at home receiving formal care increased, while the proportion receiving support from other informal carers decreased. In order to persevere in caregiving, a substantial proportion of carers reported they had adjusted their working hours or social activities. For the majority of carers the burden of the caregiving situation was substantial, and only 15% of carers expressed no desire for additional support with their care responsibilities. During follow-up, the proportion of carers of persons with dementia living at home reporting substantial strain or desire for support with their care giving decreased considerably. 55

56 Chapter 3 Table 1 Sample and care giving situation characteristics; mean (SD) or % Characteristics Persons with dementia living at home Persons with dementia t=0 (n=198) t=1 (n=74) t=2 (n=44) Age Years 81.3 (6.6) 81.8 (6.8) 82.1 (7.3) Gender Female (%) Marital status Single (%) Lives alone Yes (%) Health status VAS (0-10) 5.8 (1.9) 5.0 (1.7) 5.5 (1.6) Comorbidity No Mild Moderate Severe Supervision Needs constant supervision Can be left alone for one hour at the very most Can be left alone for a couple of hours easily Care dependence VAS (0-10) 7.0 (2.4) 7.1 (2.0) 7.2 (2.0) Informal carers Age Years 66.6 (12.9) 69.6 (12.8) 70.3 (12.5) 65 Years or older (%) Gender Female (%) Marital status Single (%) Children at home Yes (%) Education level Low Middle High Employed Yes (%) Health status VAS (0-10) 7.3 (1.6) 6.7 (1.8) 6.9 (1.5) Well-being VAS (0-10) 6.4 (1.8) 6.4 (2.0) 6.4 (1.8) Relationship Relative with dementia is: Partner Parent (in-law) Other (family) relationship Co-residents Yes (%)

57 A two year follow-up study Characteristics Persons with dementia living at home Objective burden t=0 (n=198) t=1 (n=74) t=2 (n=44) Duration of care giving Years 3.2 (2.2) 4.2 (2.5) 5.4 (2.8) Intensity of care giving Days per week 4.8 (2.8) 5.5 (2.5) 5.3 (2.6) Hours per week 38.6 (41.5) 42.3 (42.9) 34.2 (34.4) Formal care at home Yes (%) Formal day-care away from home Support by other informal carers Adjustments: Hours per week, if yes 8.5 (13.2) 5.8 (6.6) 11.4 (21.6) Yes (%) Yes (%) Hours per week, if yes Adjusted working hours (if applicable a ) Reduced volunteer work (if applicable b ) Abandoned hobbies (if applicable c ) (11.2) (5.6) (9.8) Subjective burden Caregiver Strain Index Score (0-13) 7.9 (3.0) 7.0 (3.5) 6.6 (2.7) Substantial strain % CSI-score Self-Rated Burden Score (0-10) 6.0 (2.2) 5.5 (2.4) 5.6 (2.1) Perseverance time Months 17.8 (11.1) 20.0 (10.5) 22.1 (9.3) Desire for additional support Help with care giving activities Yes (%) Emotional support Yes (%) Respite Yes (%) None No (%) Note: a number of respondents employed: n=57 (t=0); n=16 (t=1); n=8 (t=2). b number of respondents doing volunteer work: n=49 (t=0); n=15 (t=1); n=11 (t=2). c number of respondents with a hobby: n=168 (t=0); n=136 (t=1); n=44 (t=2). 57

58 Chapter 3 Variables associated with observed perseverance Table 2 highlights the differences in characteristics of persons with dementia, informal carers, and the caregiving situation at baseline (t=0) between the subsamples of persons with dementia still living at home and those admitted to a nursing home at t=1. The 74 persons with dementia still living at home after one year on average were younger, more often male and less often single. They more often had comorbidity, but less often needed constant supervision and their care dependence was lower. The mean age of the carers of these relatives with dementia was slightly higher and they were less often employed. Persons with dementia still living at home more often were the partner of the carer, less often their parent (in-law), and more often co-resided with the carer. The intensity of the care task was somewhat higher, but the carer less often had made adjustments to work or hobbies in order to provide care. On average, the subjective burden of care, measured with either CSI or SRB, was lower, and their reported PT was higher. More than 3 out of 4 carers for persons with dementia still living at home at t=1 anticipated to be able to cope with the care task for at least a year at baseline (t=0), provided the informal care situation stayed as it was, while this was less than half for carers for relatives with dementia admitted to a nursing home. Persons with dementia who had died before t=1 (not shown in table) more often had severe comorbidity (33.3% vs. 16.0%; p<.05) and on average had a lower health status (5.3 vs. 6.0; p<.05) at t=0; no significant differences were observed in objective or subjective burden of the care situation. Table 2 Differences in characteristics of the care situation at t=0 between persons with dementia living at home and admitted to a nursing home at t=1 Characteristics t=0 t=1 Total (n=156) Home (n=74) Nursing home (n=82) P Persons with dementia Age Years ** Gender Female (%) * Marital status Single (%) ** Lives alone Yes (%) n.s. Health status VAS (0-10) n.s. Comorbidity Yes (%) * Needs constant supervision Yes (%) ** Care dependence VAS (0-10) ** 58

59 A two year follow-up study Characteristics t=0 t=1 Total (n=156) Home (n=74) Nursing home (n=82) Informal carers Age Years * Gender Female (yes) n.s Marital status Single (yes) n.s. Children at home Yes (%) n.s. Education level High (%) n.s. Employed Yes (%) ** Health status VAS (0-10) n.s. Well-being VAS (0-10) n.s. Relationship Relative with dementia is partner Yes (%) *** Relative with dementia is parent Yes (%) ** (in-law) Co-residents Yes (%) ** Objective burden Duration of care giving Years n.s. Intensity of care giving Days per week * Hours per week n.s. Formal care at home Yes (%) n.s. Support by other informal carers Yes (%) n.s. Adjustments: Adjusted working hours *** (if applicable a ) Reduced volunteer work n.s. (if applicable b ) Abandoned hobbies (if applicable c ) ** Subjective burden Caregiver Strain Index ** Self-Rated Burden ** Perseverance time Perseverance time Months *** > 2 Years (%) *** > 1 Year (%) *** > 6 Months (%) *** Note: *p < 0.10; **p < 0.05; ***p < 0.01; n.s. = not significant. a number of respondents employed: n=47 (total); n=16 (home); n=31 (nursing home). b number of respondents doing volunteer work: n=38 (total); n=15 (home); n=23 (nursing home). c number of respondents with a hobby: n=134 (total); n=62 (home); n=72 (nursing home). P 59

60 Chapter 3 Not many statistically significant differences were observed in characteristics at t=1 between persons with dementia living at home at t=2 (n=44) and those who were admitted to a nursing home (n=20) or had died (n=10). The main differences (not shown in table) concerned the subjective burden of the care situation: the CSI score was lower (6.2. vs. 8.2; p<.05), SRB score was lower (4.8 vs. 6.6; p<.001) and reported PT in months was higher (24.3 vs. 13.7; p<.001) for those still living at home. Moreover, 86.4% of the informal carers for persons with dementia still living at home at t=2 anticipated to be able to cope with the care task for at least another year at t=1, provided the informal care situation stayed as it was at baseline, while this was 40% for the other carers (p<.001). Anticipated PT Figure 2 shows PT at baseline. A small proportion of carers for included persons with dementia (5%) anticipated they could cope with the caregiving situation for less than a month, if it stayed as it was, while a large proportion (42%) indicated they would cope for at least the duration of the two-year follow-up. A very similar response pattern to the PT question was observed at t=1 among the 74 carers of persons with dementia still living at home, namely 0.0%, 1.4%, 12.2%, 18.9%, 20.3% and 47.3% for the six answer categories in figure 2, respectively. This was again the case at t=2 (n=44): 0.0%, 0.0%, 6.8%, 13.6%, 27.3% and 52.3%, respectively. Anticipated PT and observed perseverance Table 3 compares anticipated and realized PT. When making this comparison, it must be emphasised that while anticipated PT was asked under the assumption that the care situation would not change, this inevitably did change in reality. Still, Table 3 shows that a large proportion of the carers who indicated their PT was less than a year at t=0, anticipated this correctly (90.2% of the 41 carers with PT < 6 months; 69.2% of the 39 carers with 6 months < PT < 1 year; i.e., 80.0% in aggregate). Similar numbers were observed at t=1 (i.e., 90.0% and 64.3%, respectively; 75.0% in aggregate). These proportions were lower when only persons with dementia admitted to a nursing home were considered (and deceased relatives excluded from % realized PT). Figure 3 provides full details on the comparison between anticipated and realized PT. Carers who indicated their PT was between 1 and 2 years (baseline) also largely anticipated this correctly, as 79.5% of the corresponding persons with 60

61 A two year follow-up study dementia no longer lived at home at t=2. Note, however, that a considerable number of these relatives already were admitted at t=1. A majority of carers who indicated their PT was at least 2 years (baseline) did not realize their anticipated PT, as only 35.4% of the corresponding relatives still lived at home at t=2. Overall, it appears that carers who indicated a limited PT (more) often anticipated their PT correctly, in particular for shorter PT intervals. 61

62 Chapter 3 Table 3 Anticipated and realized perseverance time during 2-year follow-up Perseverance time Baseline t=1 N Home after 1 year (t=1) Home after 2 years (t=2) N Home after 1 year (t=2) N (% PT cat.) % realized PT* N (% PT cat.) % realized PT* N (% PT cat.) % realized PT* - less than 6 months 41 4 (9.8%) 90.2% / 65.9% 3 (7.3%) n.a (10.0%) 90.0% / 80.0% - between 6 months and 1 year (30.8%) 69.2% / 41.0% 5 (12.8%) n.a (35.7%) 64.3% / 35.7% - between 1 year and 2 year (46.2%) n.a. 8 (20.5%) 79.5% / 51.3% (66.7%) n.a. - more than 2 years (50.6%) n.a. 28 (35.4%) 35.4%** (80.0%) n.a. Perseverance time >1 year - No (20.0%) 80.0% / 53.7% n.a. n.a (25.0%) 75.0% / 54.2% - Yes (49.2%) 49.2% n.a. n.a (76.0%) 76.0% Perseverance time >2 years - No 119 n.a. n.a. 16 (13.4%) 86.6% / 58.8% n.a. n.a. n.a. - Yes 79 n.a. n.a. 28 (35.4%) 35.4%** n.a. n.a. n.a. Note: * realized PT incl. / excl. deceased persons with dementia. ** living at home 62

63 A two year follow-up study Figure 3 Anticipated and realised perseverance time (expected path based on PT at t=0 shaded in grey) PT at t=0 Patient at t=1 PT at t=1 Patient at t=2 Deceased (n=21; 26.3%) PT shorter than 1 year (n=11; 68.7%) Deceased (n=3; 27.3%) At home (n=5; 45.5%) Admitted (n=3; 27.3%) PT shorter than 1 year (n=80; 40.4%) Living at home (n=16; 20.0%) PT between 1 and 2 years (n=3; 18.8%) Deceased (n=0; 0.0%) At home (n=3; 100.0%) Admitted (n=0; 0.0%) Admitted to nursing home (n=43; 53.7%) PT longer than 2 years (n=2; 12.5%) Deceased (n=0; 0.0%) At home (n=2; 100.0%) Admitted (n=0; 0.0%) Deceased (n=6; 15.4%) PT shorter than 1 year (n=7; 38.9%) Deceased (n=0; 0.0%) At home (n=2; 28.6%) Admitted (n=5; 71.4%) Study sample (n=198; 88.8%) PT between 1 and 2 years (n=39; 19.7%) Living at home (n=18; 46.2%) PT between 1 and 2 years (n=8; 44.4%) Deceased (n=3; 37.5%) At home (n=4; 50.0%) Admitted (n=1; 12.5%) Admitted to nursing home (n=15; 38.5%) PT longer than 2 years (n=3; 16.7%) Deceased (n=0; 0.0%) At home (n=2; 66.7%) Admitted (n=1; 33.3%) Deceased (n=15; 19.0%) PT shorter than 1 year (n=6; 15.0%) Deceased (n=2; 33.3%) At home (n=1; 16.7%) Admitted (n=3; 50.0%) PT longer than 2 years (n=79; 39.9%) Living at home (n=40; 50.6%) PT between 1 and 2 years (n=4; 10.0%) Deceased (n=0; 0.0%) At home (n=3; 75.0%) Admitted (n=1; 25.0%) Admitted to nursing home (n=24; 30.4%) PT longer than 2 years (n=30; 75.0%) Deceased (n=2; 6.7%) At home (n=24; 80.0%) Admitted (n=4; 13.3%) 63

64 Chapter 3 Table 4 shows associations between anticipated PT and characteristics of persons with dementia, their informal carers, and the caregiving situation at baseline. Carers for female persons with dementia, with a slightly higher health and lower care dependence more often indicated a PT of longer than 1 year. This was also the case among carers wh o were younger, male, employed, healthier and happier. Those providing care to their partner or co-residing with the person with dementia less often expected to cope for longer than a year, as did those with more intensive care tasks or who had abandoned their hobbies in order to provide care. In general, carers experiencing higher strain from their care task more often indicated a PT shorter than one year. Table 4 Associations between anticipated and realized perseverance time at t=0 with characteristics of the care situation at t=0; mean or % Characteristics Anticipated PT Realized PT >1 year <1 year (n=80) >1 year p (n=118) Yes (n=58) No (n=60) Persons with dementia Age Years n.s * Gender Female (%) ** n.s. Marital status Single (%) n.s n.s. Lives alone Yes (%) n.s n.s. Health status VAS (0-10) ** n.s. Comorbidity Yes (%) n.s * Needs constant supervision Yes (%) n.s ** Care dependence VAS (0-10) ** ** Informal carers Age Years ** * Gender Female (%) ** n.s. Marital status Single (%) n.s n.s. Children at home Yes (%) n.s n.s. Education level High (%) n.s n.s. Employed Yes (%) * ** Health status VAS (0-10) *** n.s. Well-being VAS (0-10) *** n.s. Relationship Relative with dementia is partner Yes (%) ** ** Relative with dementia is parent Yes (%) ** ** (in-law) Co-residents Yes (%) ** ** p 64

65 A two year follow-up study Characteristics Anticipated PT Realized PT >1 year <1 year >1 year p Yes No p (n=80) (n=118) (n=58) (n=60) Objective burden Duration of care giving Years n.s n.s. Intensity of care giving Days per week *** n.s. Hours per week * n.s. Formal care at home Yes (%) n.s n.s. Support by other informal carers Yes (%) n.s n.s. Adjustments: - Adjusted working hours (if applicable a ) n.s ** - Reduced volunteer work (if applicable b ) n.s n.s. - Abandoned hobbies (if applicable c ) *** n.s. Subjective burden Caregiver Strain Index (CSI) *** n.s. Self-Rated Burden (SRB) *** n.s. Note: *p < 0.10; **p < 0.05; ***p < 0.01; n.s. = not significant. a number of respondents employed: n=18/39/14/25, respectively. b number of respondents doing volunteer work: n=18/31/13/18, respectively. c number of respondents with a hobby: n=69/99/48/51, respectively. Regarding the realization of an anticipated PT > 1 year (n=118), carers more often anticipated their PT correctly in case they provided care to a relative with dementia who was younger, had comorbidity, did not need constant supervision or was less care dependent. Carers who were older, not employed, provided care to their partner or co-resided with the person with dementia also more often realized their PT > 1 year. In addition, carers who had adjusted their working hours in order to persevere in providing care less often realized their anticipated PT > 1 year. 65

66 Chapter 3 DISCUSSION This paper reported a longitudinal study of informal carers of persons with dementia, in which the focus was on describing the development of the care situation over a two year follow-up period and the anticipated and observed perseverance time of their informal carers. In our sample of 198 informal carers, only 74 were still living at home after 1 year and this dropped to 44 after two years. Directly asking informal carers about their expected perseverance time (PT) showed that informal carers who indicated a relatively short, limited PT (i.e. less than 1 year) in 80% of the cases predicted their PT correctly (or 53.7% excluding deceased persons with dementia). For those carers indicating a long PT, the predictive accuracy was less favourable. Before highlighting some implications of our findings, a number of limitations of this study need to be noted. First of all, we used a relatively small sample (198 informal carers) from one region in the Netherlands. Although we have no reason to expect that this selection influenced our results, further investigation of perseverance time of carers in other and potentially larger samples, regions and countries remains important. Second, the drop out in the follow-up study was selective. Especially highly burdened carers dropped out, which may have influenced our findings. Investigating perseverance time in this group remains pivotal, since it can be expected that the chance of admission of persons with dementia in this group may be especially high. Third, we used only one patient group; persons with dementia. Given the nature of this disease, this has led to a specific sample (e.g. elderly patients, relatively old carers, deterioration of health in patients, etc.). Given demographic and epidemiological projections, as well as the demand of formal and informal care of persons with dementia, knowledge regarding (the carers of) this patient group is extremely relevant. Still, investigating perseverance time in other patient groups is important as well and the here presented results may not be generalizable to other diseases. Fourth, the measure of PT we used explicitly asks about perseverance time under the assumption that the caregiving situation remains as it is now. This was done to avoid the influence of (unrealistic) projections of the future health of the person with dementia in the estimation of perseverance time and to have an indication of the current severity of the caregiving burden. However, it must be emphasised, that, certainly for diseases like dementia, with its progressive 66

67 A two year follow-up study nature, this assumption is very unlikely to hold. Hence, the indicated PT may be an overestimation of true perseverance time (e.g. if the person with dementia deteriorates over time and the increased care demands are not fully met by others) or an underestimation (e.g. if the support in caring increases more over time than the demand for care). One may expect indicated PT in contexts like dementia most often to be an overestimation of actual perseverance time, given the deterioration of persons with dementia health over time. Taking these limitations into consideration, we suggest future studies should try to generate more insight in the changes in caregiving situations between measurements, investigate PT at the time of admission of the person with dementia in relation to the main reason for admission, and add an open-ended follow-up question to the PT answering categories asking carers to provide a more precise estimate of their perseverance time. Notwithstanding these limitations, our results have some important implications. First, informal carers expecting a relatively short, limited perseverance time often predict this fairly accurately. This means that if informal carers indicate that perseverance time is limited (i.e. less than a year), formal care could anticipate either by increasing formal support at home (to increase perseverance time) or by facilitating timely admission to a nursing home. For carers expecting a PT of longer than one or two years, the accuracy is lower. This may have to do with the fact that the caregiving situation did not remain stable and became more burdensome over time, thus reducing PT. Our results imply that, while persons with dementia of carers who indicate a PT of less than a year are indeed at considerable risk of being admitted within that timeframe, relatives of carers indicating a PT of more than a year may still be admitted relatively soon. In other words, a short PT appears to be a better predictor than a long PT. Further investigation of why some carers overestimate their PT (apart from deterioration of persons with dementia health) remains important. Previous longitudinal studies [Garity, 1997; Gaugler et al.,2000] documented how informal carers for persons with dementia adapt to their role. In our study, as Figure 3 also shows, a part of the informal carers adjusted their perseverance time upwards over time. Several indicated the same anticipated perseverance time at the different measurement moments. In some cases this may relate to an adaptation process of informal carers, which helps them to continue caring beyond points in time or levels of burden they (or practitioners) had a priori 67

68 Chapter 3 expected to be possible [Pot et al., 2001; Timmermans et al., 2005]. Measuring Pt may help to quantify and gain more insight in adaptation processes. Moreover, more research could be focused on the tension between caregiving (for a dementing relative) and participation in social activities and work, and on work productivity [Durme et al., 2012]. In this study informal carers indicated to have sacrificed unpaid or paid working hours and hobbies because of the informal caregiving situation. This may achieve a prolonged stay at home of the person with dementia. Policies facilitating such a trade-off, for instance through paid leaves of absence, may support informal carers to prolong or intensify caring activities. Such policy options should be further explored [Van den Berg et al., 2006; Koopmanschap et al., 2008]. CONCLUSION Informal care is important in the context of diseases such as dementia. One of the key questions, also in light of the projected increase of persons with dementia and related demand for informal care, is how to predict and influence perseverance time of informal carers. Directly measuring PT proved possible and for carers indicating a short, limited PT appears to have clear predictive accuracy. PT may thus be helpful in monitoring need for support and planning the transition of care from home to nursing home. This should, however, be further investigated and confirmed in other samples and contexts. If confirmed, PT may be a useful instrument in research of informal care and may directly facilitate health care policy and planning by allowing timely support of carers and facilitating timely admissions of persons with dementia to a nursing home. 68

69 A two year follow-up study 69

70

71 Chapter 4 Coping with caring: Profiles of caregiving by informal carers living with a person with dementia Chapter 4 is based on: Kraijo, H., Brouwer, W., de Leeuw, R., Schrijvers, G., van Exel, J. Coping with caring: Profiles of caregiving by informal carers living with a loved one who has dementia. Dementia 2012; 11(1):

72 Chapter 4 Flow chart related to Chapter 4 t = 0 At home At home t = 1 At home Admitted t = 2 At home Admitted Chapter Research question: Can different profiles of caregiving be distinguished, and how do these relate to perseverance time? 72

73 Profiles of caregiving ABSTRACT Background and aim While the number of persons with dementia in the Netherlands will double in the next 25 years, there are no plans to expand the capacity of residential care facilities for these persons. This will almost inevitably lead to an increase in the burden placed on informal carers. We investigated how informal carers living with a relative with dementia experience their caregiving situation. Method Fifty-three carers ranked a structured set of opinion statements covering a representative range of aspects of caregiving. By-person factor analysis was used to uncover patterns in the rankings of statements. Results Five distinct profiles of caregiving were identified that provide information on the various care situations that can occur, the needs and dilemmas that these carers face, and the subjective burden and perseverance time of the carers. Conclusion The findings contribute to the development of interventions for the support of informal carers. 73

74 Chapter 4 INTRODUCTION In line with projections in many other countries, the number of persons suffering from dementia in the Netherlands is expected to double during the next 25 to 40 years. It is estimated that the prevalence of persons with dementia of 65 years and older will increase from 1 in 93 to 1 in 44 inhabitants. In terms of the proportion of active against inactive persons in society, this implies an increase of 1 person with dementia per 63 working population to 1 per 27 population [De Lange & Poos, 2007; Ferri et al., 2005; Wancate et al., 2003; Wimo et al., 2003 and 2009]. At present in the Netherlands, two out of three persons with dementia live at home. These persons with dementia are largely cared for by informal carers. The informal carers all experience the burden of care differently 22% see this as a light task, 58% as moderate and 20% as very demanding. Furthermore, 77% of informal carers find it difficult to cope with the behavioural changes of the dementing person they are caring for and approximately 50% feel themselves under a great deal of emotional stress due to this fact [Peeters et al., 2007]. In 2002, the Health Council of the Netherlands concluded that the supply and demand of facilities and services for persons with dementia in the Netherlands was not balanced. In order to answer the ever increasing needs regarding this issue, the Health Council advised the government to increase residential capacity by approximately 2% each year between 2001 and Without this expansion, it is estimated that the percentage of persons with dementia who will be able to get a place in a residential setting will decrease from 35% to 29% [Health Council of the Netherlands, 2002]. However, at the time, the government did not choose to expand capacity but to stimulate collaboration between care providers at regional level. This move was aimed at achieving improvements in care and services for persons with dementia and their informal carers in a nonresidential setting. Therefore, policy for the next few years in the Netherlands will encompass the stimulation of care in non-residential settings without extra resources for dementia care [Bussemaker, 2008]. Without any additional policy in this area, the tension between care supply and demand will certainly shift towards informal carers and their subjective burden of care will almost certainly increase considerably. 74

75 Profiles of caregiving The purpose of this study is to investigate how informal carers experience their personal caregiving situation and which needs and dilemmas they face. For this purpose we use Q methodology. Because this is a fairly novel method in the field, the next section starts with an introduction of the method, followed by a more detailed description of how the current study was carried out. The explorative study presented in this paper is part of a larger longitudinal study ( ) into the perseverance time of informal carers living with someone with dementia and its most important determinants. The results from this larger study will help in the development of specific, demand-driven interventions aimed at supporting informal carers in their task. METHOD Research method Q methodology combines elements of qualitative and quantitative research methods and provides a scientific base to study the perceptions, preferences and opinions of persons regarding a certain subject. This type of research is relatively new to the field of health care but has been widely used in other areas of policy research during the last 70 years [Stephenson, 1935; Brown, 1980]. The following studies in health care have been published recently: Tielen et al., 2008; Kreuger et al., 2008; Van Exel et al., 2007, 2006; Baker, 2006; Bryant et al., 2006; Risdon et al., 2003; Stenner et al., In a Q methodological study, respondents are asked to rank a set of opinion statements. This method of ranking enables the respondents to give their opinion and attitude towards the subject being studied [Cross, 2005; Smith, 2001; Watts, 2005, Van Exel & de Graaf, 2005]. William Stephenson (1935), who was the founder of Q methodology, introduced the method as an inversion of conventional (by-item) factor analysis, in the sense that Q correlates persons instead of tests - correlation between individual rankings of statements then indicates similar viewpoints. Significant clusters of correlations can be identified through by-person factor analysis, described as common viewpoints, and individual respondents can be mapped to these viewpoints. Therefore, Q methodology is used to describe a population of viewpoints and not as is the case in conventional factor analysis a population of persons [Risdon et al., 2003]. Only a small research population 75

76 Chapter 4 is needed because the aim is to reveal the commonly shared viewpoints and not the size of the population that subscribes to these viewpoints (Bryant et al., 2006; Risdon et al., 2003; Smith, 2001). Our study was conducted in three steps described below. Step 1: Collecting and selecting statements The first step consisted of collecting a set of opinion statements that typically represented the situation of informal carers living with someone with dementia this is known as the Q-set. In order to design the Q-set, informal carers were asked in a series of five panel interviews about how they experience their own care situation, including which problem areas and dilemmas they have to face. These interviews were conducted by using fourteen problem areas 4 which carers of persons with dementia may encounter over time and as defined by the Dutch National Dementia Programme [Landelijk Dementie Programma (LDP); Peeters, van Beek & Francke, 2007]. The stories that the participants told the panel were an important component for the design of the Q-set. As well as this reference material, an earlier Q methodological study on the attitudes of informal carers regarding respite care [Van Exel et al., 2007] was examined as well as the questionnaire Problems and wishes of informal carers of persons with dementia (freely translated from the Dutch) [Van der Poel & van Beek, 2006]. From these sources, two authors [Kraijo & Van Exel] collected and structured opinion statements that related to the most important themes surrounding informal care for persons with dementia (see table 1) this was done by using an iterative process. Subsequently, a representative set of statements was selected. The final Q-set consisted of 36 statements from informal carers living with someone with dementia. These 36 statements were then numbered randomly and printed onto cards that fitted into the slots on the response sheet (see figure 1). The Q-set was tested by five informal carers and then approved as the definitive version without any further changes being made. 4 The fourteen problem areas are: the feeling that something isn t right; what exactly is going on and what may help; afraid, angry and confused; totally alone in the situation; avoiding contact; physical care; danger; carer also has health problems; loss; it s all too much; giving up and losing control; through good and bad times; bad communication with health professionals & resistance to admission [Peeters, van Beek & Francke, 2007]. 76

77 Profiles of caregiving Table 1 Statement The statements according to theme Motivation for providing informal care I feel as if it is my duty to care for him/her. 19 Taking care of him/her gives me a good feeling. 24 I would feel guilty if I had to hand over his/her care to someone else. 32 I would feel ashamed if I had to hand over his/her care to someone else. 8 Problem areas for the informal carer (burden/strain, strength) Physical/mental Caring for him/her is physically demanding. 33 Caring for him/her is emotionally demanding. 17 I can cope well with his/her care. 7 I am worried that unsafe situations may occur around the house as a result of his/her behaviour. 5 Practical/financial We are not very well off financially because I am the carer. 34 It is difficult to set your own boundaries and stand up for yourself. 1 I can deal well with his/her behavioural changes that have resulted from the dementia. 31 Relational/social Because I have to take care of him/her, I have less time for other activities. 28 I have less contact with other persons because of his/her dementia. 30 I avoid contact with other persons because of his/her dementia. 10 I feel lonely. 4 Support experienced by carers (other carers, family, social environment, organisations; information, availability, access) Informal My social environment understands well what it means to be able to care for him/her. 6 My social environment leaves the task of caring for him/her up to me. 14 If I need help then I can always ask someone in my social environment. 16 Formal Healthcare professionals do not involve me when they make decisions about his/her care. 26 The healthcare professionals take my concern for him/her seriously. 27 It is clear to me how the care for persons with dementia is organized. 9 The healthcare professionals do have time for me. 18 If I have a question about his/her care, then I know where to go. 35 Nr 77

78 Chapter 4 Statement Inclination towards and obstacles felt in asking for support in the care He/she wants preferably for me to provide the care. 2 I want to keep control over his/her care situation. 11 I don t have any problem asking for help if I think that I need it. 13 I am apprehensive about him/her being admitted to residential care. 29 I would like to hand over his/her care to someone else. 25 Need for support/respite care (social environment and institutions; social, emotional, practical) I appreciate it when someone asks me how I am myself. 12 I appreciate it when someone asks me if I can carry on caring for him/her like this. 20 I would like to have a regular respite break each week when I can get away and do something else. 36 I would like to have a holiday. 21 I would like a permanent contact person who I can ask for advice if necessary. 22 I would like to have a focal liaison point e.g. a professional who can help me organise all kinds of practical things involved in the care process. 3 I would like to be better prepared for what is going to happen in the future so that I will know how to react to situations. 15 I would like to know for certain that there would be a place in residential care should it be needed in the future if caring for him/her at home is no longer possible. 23 Nr Figure 1 Response sheet LEAST MOST AGREE AGREE

79 Profiles of caregiving Step 2: The implementation of the study The informal carers who participated in this study were recruited from the database of 223 carers living at home with a relative with dementia and who were taking part in the previously mentioned longitudinal study into perseverance time. Out of the 223 informal carers, 124 (56%) were living in the same house as the person with dementia. From these 124 carers, 53 (43%) agreed to take part in our study. Participants and non-participants did not differ in terms of age, health status and the principal variables of concern for this study - subjective burden of caring and perseverance time. Female informal carers more often agreed to participate than male informal carers, as did higher educated carers as compared to lower educated informal carers (p<.01). The interviews were conducted in the homes of the carers by the first author of this paper. After first sorting the statements into three categories (agree, neutral, disagree) the informal carers then ranked the statements according to a scale of agree the least to agree the most using the response sheet provided (see figure 1). Any comments given by the informal carers during and following the sorting of the statements were carefully noted down. Regarding the two statements at either end of the scale those representing the very least or the very most in agreement the participants were asked to describe their motivation clearly. This material was then used later to help in the interpretation of the results and also used as quotes in the description of the profiles (in italics in the results section). Step 3: The Q analysis The individual rankings of statement were subsequently analysed using byperson factor analysis, with the aim of identifying a number of corresponding ways in which the informal carers ranked the statements 5. For the resulting factors (i.e. profiles of caregiving) a weighted average ranking of the statements was compiled based on the rankings of the carers associated with the factor and the corresponding correlation coefficients as weights. These compiled rankings of statements, representing how an informal carer with a correlation coefficient of 1 with a factor would have ranked the statements, were used to describe the profiles concerned according to characteristic and distinguishing statements. 5 The dedicated software can be downloaded at qmethod. 79

80 Chapter 4 A statement is considered characteristic for a profile whenever it scores a -4, -3, + 3, + 4 in the compiled ranking. A statement is considered distinguishing whenever the score of the statement statistically significantly differs from those in the other profiles (p <.01). The compiled rankings for each profile are given in table 3. Together with the explanations from informal carers to their ranking of the statements, these form the base for the description of the profiles. Additional data The interviews for this study were conducted at the time of inclusion of the respondent in the longitudinal study into perseverance time of informal carers for a relative with dementia. As part of the longitudinal study, respondents completed an extensive questionnaire concerning their care situation. Here we use selected data from this questionnaire concerning characteristics of the informal carers, their relative with dementia and the care situation. Regarding the care situation, the questionnaire included questions about subjective carer burden and perseverance time. Burden was assessed using two measures, the Self-Rated Burden (SRB) scale [Van Exel et al., 2004] and the Caregiver Strain Index [Robinson, 1983]. The SRB is a visual analogue scale ranging between 0 ( not at all straining ) and 100 ( much too straining ) on which carers were asked to indicate the overall subjective burden of caregiving. The CSI comprises 13 items referring to the stressors in caring, each completed yes/ no, with the yes answers summed to give an overall strain score. Perseverance time was measured using the following question: If the informal care situation stays as it is now, how long will you be able to cope with the care? (answer options: less than six months; more than six months but less than one year; more than one year but less than two years; more than two years). RESULTS Fifty-three informal carers living with a relative with dementia participated in this study. The characteristics of these carers, their relative with dementia and, the care situation are set out in table 2. The analysis of the individual rankings resulted in a five factor solution. In other words, five profiles of caregiving by living with a relative with dementia 80

81 Profiles of caregiving could be differentiated regarding their perception towards their individual care situation. Together, the five profiles account for 50% of the variance in the 53 individual rankings of statements. The profiles are presented in sequential order of increasing subjective burden as indicated by the carers associated with each profile. In the description of the profiles, the numbers of the statements are given between parenthesis (see table 3) and the quotes from the carers concerned are given in italics. Table 2 Sample characteristics (n = 53) Characteristics % Mean (SD) The informal carer Gender Female 50.0 Age Years 74.4 (8.4) Educational level Low 19.2 Middle 42.3 High 38.5 Health status VAS (0-10) 6.9 (1.6) Well-being VAS (0-10) 5.9 (1.8) The person with dementia Gender Female 48.1 Age Years 78.8 (7.7) Health status VAS (0-10) 5.7 (2.0) Comorbidity 78.8 Degree of comorbidity Slight 19.5 Medium 46.3 Severe 34.1 Care dependence VAS (0-10) 7.7 (2.1) Relationship Partner 94.2 Objective burden Care by main informal carer Hours per week 56.6 (42.0) Care by other informal carers 36.7 Professional care at home 88.2 Supervision Continuous supervision required 17.3 Can only be alone for a maximum of 1 hour 38.5 Can be alone for a couple of hours

82 Chapter 4 Characteristics % Mean (SD) Subjective burden Self-Rated Burden (SRB) VAS (0-10) 5.7 (2.2) Caregiver Strain Index (CSI) Score (0-13) 8.8 (2.5) Perseverance time < 6 months 12.2 > 6 months < one year 16.3 > 1 year < 2 years 18.4 > 2 years 53.1 Months 21.1(10.5) Profile 1 These informal carers are able to cope well, both physically and emotionally with their task (7, 17, and 33). The care required is still fairly limited and can be carried out without too much difficulty. They are able to cope with the behavioural changes of the relative with dementia (31), are not afraid of unsafe situations occurring (5) and do not avoid contact with others as a direct result of their relative s dementia (10). These informal carers have the least need for a regular respite break in which they can get away from the care situation (36). In addition, these carers do not want to hand the care over to someone else (25). If she will suffer from that, then so will I. Whilst in one way they see it as their duty to care for their relative with dementia (19) and are apprehensive about them being admitted to residential care (29), they also admit to thinking that their relative wants and prefers to be cared for by them (2). Moreover, these informal carers (more than those in the other profiles) do get satisfaction i.e. feel good about caring for their relative with dementia (24). They appear to know their way around the world of care well (35) and need to be reassured that a place in residential care would be available for their relative should it be needed in the future if care at home is no longer possible (23). If I think about the future, then I get a kind of panicky feeling, so knowing that residential care is a possibility reassures me again. As far as the future is concerned, these informal carers want to remain in control of the care given (11). Informal carers with this profile are able to cope well with the care they are giving. 82

83 Profiles of caregiving Profile 2 This group of informal carers can cope reasonably well with the care (7). However, they also indicate clearly that they need support (3, 22) and reassurance that things will be OK in the future. For example, they would like to have a focal liaison point for advice and a health professional who can organise all kinds of practical things that are involved with the care process (3). The need for support stems from the informal carer s wish to remain in control of the care for their relative (11, 25). Being so close to my partner means that I know a lot about him, especially his emotional side and that s why I want to decide when, where and what is going to happen. Whilst informal carers in this group do not feel that healthcare professionals pay them enough attention, they do want to be able to ask advice on how to deal better with the behavioural changes that result from the dementia (22, 31, and 5). They also indicate that they would like to have regular (monthly) respite breaks in order to rebuild their energy levels (36). Just a day and night once or twice a month would be nice - to be able to visit the grandchildren. They want to carry on caring for their relative as long as possible and see this as their duty (19). They are apprehensive about an admission to residential care (29). It would be difficult for me to live my own life again. I think I would walk around feeling sorry for myself. However, they do want to have reassurance regarding an available place in residential care should the time come that the person can no longer be cared for at home (23). With this group, fortunately that time has not yet arrived. Caring for the relative is not physically demanding (33) and there is no fear of unsafe situations occurring (5). An informal carer with this profile wants support in order to carry on giving the care but at the same time wants to keep control over the situation. 83

84 Chapter 4 Table 3 Compilation of scores per profile Statements Profile Sometimes it is difficult to set your own boundaries and stand up for yourself He/she wants preferably for me to provide the care I would like to have a focal liaison point e.g. a professional who can help me to organise all kinds of practical things involved in the care process. 4 I feel lonely I am worried that unsafe situations may occur around the house as a result of his/her behaviour My social environment understands well what it means to care for him/her I can cope well with his/her care I would feel ashamed if I had to hand over his/her care to someone else It is clear to me how the care for persons with dementia is organized I avoid contact with other persons because of his/her dementia I want to keep control over his/her care situation I appreciate it when someone asks me how I am myself I don t have any problem asking for help if I think that I need it My social environment leaves the task of caring for him/her up to me I would like to be better prepared for what is going to happen in the future so that I will know how to react to situations. 16 If I need help then I can always ask someone in my social environment Caring for him/her is emotionally demanding The healthcare professionals do have time for me I feel as if it is my duty to care for him/her I appreciate it when someone asks me if I can carry on caring for him/her like this I would like to have a holiday I would like a permanent contact person who I can ask for advice if necessary

85 Profiles of caregiving Statements Profile I would like to know for certain that there would be a place in residential care should it be needed in the future if caring for him/her at home is no longer possible. 24 Taking care of him/her gives me a good feeling I would like to hand over his/her care to someone else Healthcare professionals do not involve me when they make decisions about his/her care The healthcare professionals take my concern for him/her seriously Because I have to take care of him/her, I have less time for other activities I am apprehensive about him/her being admitted to residential care I have less contact with other persons because of his/her dementia I can deal with his/her behavioural changes that have resulted from the dementia I would feel guilty if I had to hand over his/her care to someone else Caring for him/her is physically demanding We are not very well off financially because I am the carer If I have a question about his/her care, then I know where to go I need to have a regular respite break each week when I can get away and do something else Note: Distinguishing statements are marked as follows p<.05; p<

86 Chapter 4 Profile 3 These informal carers find their task physically demanding (33). Sometimes I m on the go 24 hours a day. In spite of this, it is the emotional demand that weighs the most (17). Seeing my husband s sadness and the helplessness that seems to pour out of him and the fact that I can t help him at all. They sometimes find it difficult to set boundaries and make room for their own activities (28). Family and friends understand perfectly well what it is to be a carer for someone who is suffering from dementia (6). In this profile, more than other informal carers, these persons do perceive the support they get from their social environment (6, 16). Everyone asks how he is and they also understand my situation. Out of all the informal carers, these persons have the least feeling of being on their own (14). Informal carers in this situation do not find it difficult to ask family and friends for help (13). If it s really necessary I can always ask my neighbours or one of the children for help. Therefore they do not feel isolated (4). They have good and supportive contacts in their own social environment (10, 30). I am not ashamed of the situation and take him everywhere with me. However, in spite of the support from their environment, these informal carers do not want to hand over the care to anyone else (25). If I did that I would feel as though I was leaving him in the lurch. They experience fulfilling their task for as long as possible as a duty (19). They are apprehensive about an admission to residential care (29) because of the negative image that this carries. They want to save their relative from admission if at all possible. I wouldn t want that to happen to him. I think that he would deteriorate even further if he was admitted to a care home. Moreover, they are apprehensive about an admission because their relative prefers to be taken care of by them (2) and because they would be missed so much if they were not the one giving the care. An informal carer with this profile experiences the task of providing care as quite demanding but has a lot of support from his/her environment. Profile 4 In this profile, the persons in the direct social environment of the carers do not understand very much about the situation (6). Nobody understands properly because they only see him for a few hours at a time. This is why informal carers in this profile can only expect a little help and support from their family and friends (16). Whilst they do not avoid making contact with others themselves (10), there 86

87 Profiles of caregiving is less contact with others (30) as a direct result of the dementia. We have a lot less contact with other persons due to the advanced incontinence. All of the above leaves these informal carers with the feeling that they cannot depend on persons in their social environment when they need support themselves (13, 16). These informal carers find the task of caring for someone with dementia very demanding (17) indeed. Together with my wife, I cry a lot about the situation that has arisen and all the grief and sadness that goes with it. They find it very difficult to cope with the behavioural changes that have resulted from the dementia (31). These carers feel as if the burden of care has been left to them alone by oersons in their environment much more than the informal carers in other profiles (14). Because he can t join in with social activities anymore and is not much fun to be with, nobody wants to do anything with him. Therefore, with these informal carers, loneliness comes to the foreground the most (4). Moreover, due to the time pressure of providing the care itself, these informal carers have less time to focus on other activities (28). They do not readily ask for help from professional organisations because they have experienced a lack of being consulted on care decisions for their relative in the past (13). They would welcome a regular respite break in their care task each week (36). In spite of the seriousness of the situation and the sense of duty to take care of their dementing relative, these informal carers still don t want to hand over the care to someone else (25). When you have shared everything together for 58 years, I just see it as my duty to take care of her. They are even apprehensive about a future admission to residential care (29) I know he would be very unhappy there. He is dreading that himself. An informal carer with this profile experiences the task of caregiving as very demanding and does not receive much support from family and friends. Profile 5 Informal carers in this profile are actually barely able to keep up their task of providing their relative with care (7). I am extremely tired and hardly ever have any time for myself. They find it very difficult to cope with the behavioural changes that have resulted from the dementia (31). The person you loved so much is not there anymore and the person who is there - well you just feel sorry for them and take care of them. Of all the informal carers, these are the ones who worry the most about unsafe situations occurring (5). I have to keep an eye on him all 87

88 Chapter 4 the time. They experience caring for the person with dementia as emotionally demanding (17). Slowly and surely you start to suffer yourself. Caring for your relative no longer gives you any satisfaction (24) I see caring for him as my duty but it produces feelings of frustration rather than any good feelings. They find it regrettable that family and friends do not seem to appreciate just what being a informal carer entails (6). The uncertainty, doubt and strain are expressed in a need for support in many areas, including a focal point for advice and regulatory matters (3, 22). The care itself is heavy enough. In addition, whilst there is a real desire for a short break or holiday, it actually is essential in order for the informal carer to carry on with the care task. However, in spite of everything these informal carers still see it as their duty to carry on with the care (19). That s the promise you make when you marry. Of all informal carers, these are the persons who want to keep control of the care task the least (11) and who are also the least apprehensive about admission of their relative to a residential care setting (29). I think that now, after all these years it will be a relief for me when I can live my own life again without my partner. These informal carers have already reached the stage where they would no longer be ashamed or feel guilty if they had to hand over care to someone else (8, 32). These informal carers have an express need for a guarantee that, should they need it there would be a place available for their relative in residential care (23). I need a lot of reassurance that he will be temporarily admitted to residential care if there comes a time that I can t cope any more but nobody gives me that reassurance. However, this certainly doesn t mean that they are looking forward to their relative being placed in a care home. That would mean the end of our marriage. I would have to totally rethink my whole life everything I do. I suppose you could say that admission is the same as death in many ways. An informal carer with this profile is overtaxed and can barely cope with providing the care for their dementing relative that is required. Similarities between the profiles A number of striking similarities between the five profiles have been observed. Whilst informal carers consider caring for their relative with dementia as their duty (19) most of them also say it makes them feel good (24). The majority of informal carers want to keep control of the care their relative receives as much as possible (11) and are apprehensive about admission of the person to 88

89 Profiles of caregiving residential care (29). In spite of this, in general the need for respite care scores relatively high (36). Contrary to what is often thought about informal carers of persons with dementia, they do not avoid contact with their social environment (10). Financial aspects hardly play a role in the whole scenario (34). In general, the need for reassurance felt by informal carers is that there must be a safety net in place if a time comes when it will be needed (23). Profiles and background characteristics The number of informal carers who took part in this study is insufficient for giving any indication of the prevalence of the profiles among carers living with a relative with dementia or for generalising the associations between profiles and background characteristics of the care situation. A number of striking relationships between the profiles and data of the informal carers (see table 2) are given here as hypotheses for further study. It is clear that there is a strong positive association between the profiles and the caregiver burden as measured with the SRB (r s = 0.601; p < 0.01) or the CSI (r s = 0.527; p < 0.01) scale and the perseverance time (r s = - 410; p < 0.05) as indicated by the informal carers. The informal carers in profile 1, for example, indicated a lower burden (3.2 on SRB; 5.4 on CSI) and a longer perseverance time (27.6 months) than those in profile 5 who clearly reported a higher burden (7.3 on SRB and 10.2 on CSI) and a shorter perseverance time (14.6 months). A short summary has been made for each profile outlining the principal characteristic and distinguishing characteristics - please see figure 2 below. These summaries will be used in further research to study how often the profiles occur in a larger sample of informal carers and the relationship between the profiles and the characteristics of informal carers, persons with dementia and the care situation itself. 89

90 Chapter 4 Figure 2 Summary of the profiles and scores for measuring prevalence. Profile 1. I can cope well with caring for my relative, both physically and emotionally. I can also deal well with the behavioural changes that have resulted from the dementia. I don t feel the need to get away from things at present. If I did have a question about the care, I would know where to go. Not at all Not really A little bit Well Very well Profile 2. I can cope reasonably well with the caregiving. I don t find the caregiving physically demanding, and I can manage the situation reasonably well emotionally. While the health care professionals don t have a lot of time for me, I really do need someone who can give me advice and organize practical things for me. I want to continue to provide care for as long as I can, and that s why I need reassurance about certain things for example, that it s possible to get away from the situation now and again. Not at all Not really A little bit Well Very well Profile 3. I find the caregiving physically, and especially emotionally, demanding. Luckily, if I need help, I can always ask one of my family or friends. They really understand what it means to take care of him/her, and they help and support me whenever necessary. Thanks to their support, I m also able to do my own things. Not at all Not really A little bit Well Very well Profile 4. I find the caregiving emotionally demanding. I have much less contact with my family and friends due to my relative s dementia. I often have the feeling that it s all my responsibility. Those around me don t really understand what it means to be a carer in this situation, and they re all too happy to leave everything to me. That s why I find it hard to ask for help when I actually really need it. The health care professionals don t take me seriously, either. Not at all Not really A little bit Well Very well Profile 5. I can t really cope with the care anymore. I don t feel good about the situation anymore, and I sometimes worry that unsafe situations might arise. I wouldn t be ashamed or feel guilty if I had to hand over the care to someone else. Although I m not really looking forward to an admission to residential care, I do need to know for certain that there will be a place available if I can t cope at home anymore. I would really welcome the chance to have a break so I can recharge my batteries. Not at all Not really A little bit Well Very well 90

91 Profiles of caregiving DISCUSSION This study produced five distinctive profiles relating to informal carers living with a person with dementia. A short summary ordered by registered subjective burden would be as follows: informal carers who cope well with providing care; informal carers who would like to receive help in providing the care but who want to remain in control of the care process; informal carers who find it quite demanding to keep up the level of care needed but who do receive a lot of help and support from their family and friends; informal carers who experience their task of caregiving as very demanding and who do not receive much support from family and friends; informal carers who can hardly cope with providing the care for their relative with dementia that is required. The profiles show that informal carers experience a number of dilemmas in their task of caring for a relative with dementia. Therefore, some attention will be paid to these dilemmas and their implications in this discussion section. From the interviews, it became clear that informal carers want to retain control of the care process for their relative for as long as possible and that they really do not want to hand over the care to others. However, they also indicated an express need for reassurance that there would be a place available in residential care should the need arise read here that the person can no longer be cared for at home. This dilemma is kept alive by the fact that whilst persons realise only too well that handing over the care will be unavoidable at some point, they also know that they want to put this moment off for as long as possible [Van Exel, de Ruiter & Brouwer, 2008]. Moreover, informal carers indicate that their relative with dementia only wants to be cared for by them and sometimes by them alone. For this reason, the informal carers want to carry on with their task after all, they have promised, in sickness and in health to look after each other until death. However, there comes a moment when they want to share the care with someone else. This is not always a truly sincere thought but has to do with self-protection and the ability to carry on caregiving for longer. Reaching a decision to hand over care is often accompanied by feelings of guilt and shame. However, this is not always the case as sometimes persons just resign themselves to the fact that they can have no control over how the disease progresses and that they will not always be able to care for their relative themselves. 91

92 Chapter 4 Throughout the whole disease process, informal carers seem to wrestle with a varying complexity of feelings resistance, anger, sadness, powerlessness, acceptance, acquiescence etc. that have to do with the unavoidable but gradual phases of realisation that they have to say goodbye to their relative. Changes in personality, admission to residential care and death are recognisable breaking points in these personal relationships. Uncertainty, unavoidability and losing control over the situation are all things which take over the informal carer s life. The balance between caregiver strain and caregiver strength is characterised by the degree to which persons experience satisfaction when providing informal care. Caring for your life partner can be a very satisfying experience and can be the incentive needed to continue with providing informal care. But, that incentive can be severely damaged when changes in personality/character occur. Feelings of estrangement then take over. The very demanding emotional situation which, on the one side is the commitment to the relative and on the other side, the separation that is taking place due to the dementia, starts a phase in which special attention and support for the informal carer is needed. Informal carers do not avoid contact with their environment as a result of their relative s dementia. However, when behavioural changes and incontinence become a reality, then it becomes more and more difficult for persons to maintain contact with their social environment. This is also a sign that priority should be given to an offer of respite care to the informal carer. At this point, attention, understanding and empathy for the informal carers by persons in their social environment are important and function as support for the informal carers. If there is no understanding from the person s social environment, including direct family members, then it may be necessary to focus more on helping family and friends to understand the situation better. One of the images that comes to the foreground from earlier typing of dilemmas is that of the carer who needs but does not ask for support or at least not without difficulty [Van Exel, de Graaf & Brouwer, 2007]. However, this dilemma is not recognised when healthcare professionals work on a demand-driven basis. What happens then is the omission of early signalling and offers of support. For these carers, a mild form of assertive outreach in the care offers them a chance of temporary support which is just what they need in order to carry on with their task longer. A trusted representative who can offer professional advice to informal carers regarding dementia and who can support them in organising all 92

93 Profiles of caregiving kinds of practical things involved in the care is a possible answer to this problem. Although the number of respondents included in this study is sufficient for the purposes of Q methodology and no substantial selection bias was found between participants and non-participants from the larger longitudinal study, some concerns regarding the population of study need mentioning. A common feature of research among informal carers is that carers who experience very low or very high burden are under-represented. Those with very low burden often do not identify or report themselves as informal carers and therefore are difficult to trace, while those who are very strained by their care situation are not able or less willing to participate in any type of research. It is difficult to say whether the omission of these respondents has influenced our results the profiles seem to represent care situations varying from no strain at the one end to substantial strain on the other, perhaps with the exception of more extreme, crisis situations that may occur in the last phase before admission of the person with dementia to a residential setting. Considering that the wider purpose of our project is to inform the development of interventions to support carers in their task, this issue appears to be of limited concern. In any case, the data that will be gathered during the follow-up study will inform about the prevalence of the profiles in a wider population of carers for a relative with dementia and thus also reveal whether specific groups are ill-represented by these profiles. Because the follow-up study is longitudinal, we will also be able to investigate whether informal carers move between profiles over time and how this relates to the progression of their relative s dementia. In addition, this study has been conducted among carers living in the same house as the person with dementia. The Q-set was developed on the basis of opinion statements from carers regardless of the physical distance that separates them from the dementing person. Further research should show whether the profiles described in this paper also apply to carers who are not living in the same house as the person with dementia. The profiles were presented in sequential order of subjective caregiver burden. We found that the profiles were also associated with the perseverance time as indicated by the informal carers. This provides a first indication of the relevance of the concept of perseverance time as an indicator of how informal carers cope with their caregiving situation and the type of support they need to be able to 93

94 Chapter 4 carry on. The profiles are therefore considered an important starting point for a longitudinal follow-up study investigating the perseverance time of carers and its determinants, in which the prevalence of the profiles will also be identified (see summary of the profiles in figure 2). CONCLUSION The results of this study will contribute to the development of more specific, demand-driven interventions for the support of informal carers living with a relative with dementia. 94

95 Profiles of caregiving APPENDIX TO CHAPTER 4 Profiles of caregiving in longitudinal perspective 95

96 Chapter 4 INTRODUCTION AND AIM In chapter 4 we described five profiles of caregiving by informal carers living at home with their dementing relative, mostly their partner: (profile 1) carers who cope well with providing care, (profile 2) carers who would like to receive help with providing care, but who want to remain in control of the care process, (profile 3) carers who find it quite demanding to maintain the level of care needed, but who get a lot of help and support from their family and friends, (profile 4) carers who experience their task of caregiving as very demanding and who do not receive much support from family and friends, and (profile 5) carers who can barely cope with providing the care required by their relative with dementia. In this appendix we explore the adherence of informal carers from the longitudinal cohort study discussed in Chapter 3 to these five caregiving profiles, as well as the associations of adherence to these profiles with several characteristics of the caregiving situation. We investigated if it is it feasible for informal carers to typify their care situation using the profiles, and we wondered if the profile-scores are associated with perseverance time in a longitudinal perspective. METHODS The sample of the longitudinal cohort study consisted of 74 informal carers at t=1 and 44 informal carers at t=2. Details of the sample and drop-out during the year follow-up period were presented in Chapter 3, table 1. Adherence to the five profiles of caregiving was measured using the questionnaire presented in Figure 1 in Chapter 4. Respondents were presented with abbreviated descriptions of the five profiles of caregiving discussed in Chapter 4, in a fixed order, increasing in subjective burden of the caregiving situation but varying in other aspects (e.g., receiving support). Informal carers used 5-point Likert-type scales to indicate how well each profile described their own caregiving situation. This question was included in the written questionnaire used in the longitudinal cohort study and was administered at t=1 and t=2. Changes in adherence over the one year follow-up period were computed by subtracting adherence at t=1 from adherence at t=2. These scores were categorized into three categories: lower (if score (t=2) < score (t=1)), same (if score (t=2) = score (t=1)) and higher (if score (t=2) > score (t=1)). Adherence to 96

97 Profiles of caregiving the profiles was explored using descriptive statistics and Spearman correlations (p<.10). Associations of adherence scores to the five profiles with health of care giver and care recipient, objective burden (caregiving hours per week), subjective burden (Caregiver Strain Index and Self Rated Burden), perseverance time, happiness (CarerQol-VAS), and still living at home after one year (at t=2) were explored using Spearman correlations (p<.10). These measures are described in detail in Chapter 2. RESULTS All respondents provided adherence scores to all five profiles of caregiving at t=1 as well as at t=2. Figure 2 shows the adherence scores of informal carers to the five profiles at the two measurement moments. Mean scores at t=1were 3.4, 2.9, 3.0, 2.6 and 2.6, respectively, and at t=2 were 3.5, 3.0, 3.0, 2.7 and 2.9. Carers who dropped-out of sample during the one year follow-up period scored statistically significantly (p<.05) lower at t=1 on profile 1, representing lower burden care situations, and higher on profiles 4 and 5, representing higher burden care situations. At t=1, a higher adherence score on profile 1 was associated with lower scores on profiles 4 and 5, a higher score on profile 2 was associated with higher scores on profiles 3, 4 and 5, and a higher score on profile 4 was associated with a higher score on profile 5. Data at t=2 showed a similar pattern; a higher adherence score on profile 1 was associated with a higher score on profiles 2, a higher score on profile 2 was associated with higher scores on profiles 3, 4 and 5, a higher score on profile 3 was associated with higher scores on profiles 4 and 5, and a higher score on profile 4 was associated with a higher score on profile 5. Comparing scores at t=1 and t=2, a higher adherence score on profile 1 at t=1 was associated with a higher score on profile 1 at t=2 and a lower score on profile 4 at t=2, a higher score on profile 2 at t=1 was associated with a higher score on profile 4 at t=2, a higher score on profile 3 at t=1 was associated with higher scores on profiles 3, 4 and 5 at t=2, a higher adherence score on profile 4 at t=1 was associated with a higher score on profile 4 at t=2, and a higher score on profile 5 at t=1 was associated with higher scores on profile 5 at t=2. 97

98 Chapter 4 Figure 2 gives further insight into the changes in adherence over the one year follow-up period. The figure shows that adherence scores changed upwards and downwards for all profiles. Notably, large majorities of 65-80% gave lower or same scores to profiles 1, 2 and 3 at t=2 as compared to t=1, whereas about 80% gave same or higher scores to profiles 4 and 5. This indicates that one year later carers associated themselves more strongly with carers who experience their task of caregiving as very demanding and who do not receive much support from family and friends and cares who can barely cope with providing the care required by their relative with dementia. A higher adherence score on carers who cope well with providing care (profile 1) was associated with higher health and happiness of the carer, lower objective burden, lower need for support, lower subjective burden on CSI and SRB scales, and higher perseverance time. A higher adherence score on carers who would like to receive help in providing the care but who want to remain in control of the care process (profile 2) was associated with higher health of the informal carer, higher objective burden and higher subjective burden on SRB. A higher adherence score on carers who find it quite demanding to maintain the level of care needed but who get a lot of help (profile 3) was associated with lower health of the person with dementia and higher need for support. A higher adherence score on carers who experience their task of caregiving as very demanding and who do not receive much support from family and friends (profile 4) was associated with lower health and happiness of the carer, higher objective burden, less help from other informal carers, higher need for support, higher subjective burden on CSI and SRB scales, and lower perseverance time. Finally, a higher adherence score on carers who can barely cope with providing the care required by their relative with dementia (profile 5) was associated with lower happiness of the carer, higher objective burden, higher subjective burden on CSI and SRB scales, and lower perseverance time. DISCUSSION This explorative study showed that it was feasible to informal carers for a person with dementia to describe their caregiving situation using the five profiles 98

99 Profiles of caregiving developed on the basis of the results of Chapter 4, and carers responses provided some interesting insights. First, the relations between adherence scores on the five profiles of caregiving at each of the measurement moments as well as between the two measurement moments were plausible. Informal carers giving higher scores to profiles representing lower burden care situations provided lower scores to those representing higher burden situations, vice versa, both at t=1 and t=2 as well as at t=2 compared to t=1. Second, the changes in adherence scores between the two measurement moments indicate that as caregiving time progresses, on average, carers give lower scores to profiles representing lower burden care situations and higher scores to the profiles representing higher burden situations. In other words, informal carers seem to indicate that in one year their ability to cope with their caregiving situation decreased. Third, univariate association showed that a higher adherence score on profile 1 at t=1 was associated with higher odds of the person with dementia still living at home at t=2, while higher scores on profiles 4 and 5 were associated with significantly lower odds. Finally, the associations between adherence scores and measures of burden of the caregiving situation confirm the findings from Chapter 4, which suggested that profiles of caregiving 1 to 5 represent consecutively increasing levels of burden, associated with decreasing perseverance time. Although these findings seem plausible, it is important to note that they are based on a sample of limited size and on written questionnaires. The feasibility and validity of the five profiles of caregiving for typifying caregiving situations needs to be studied further before conclusions can be drawn about their value for use in practice. For instance, it might be useful in addition to the score per profile to ask informal carers which profile fits the most. Nonetheless, this study was embedded in a larger longitudinal cohort study and the results seem encouraging enough to recommend researchers and practitioners to consider an approach as presented in Chapter 4 and in this appendix to generate more insight in the care situations they analyse or work with. Such insight can, for instance, be helpful in conducting more subgroup sensitive research and develop better monitoring systems and more personalized support programmes for informal carers. 99

100 Chapter 4 Figure 1 Adherence to the profiles of caregiving at t=1 (left) and t=2 (right) Profile 1: Carers who cope well with providing care Profile 2: Carers who would like to receive help with providing care but who want to remain in control of the care process Profile 3: Carers who find it quite demanding to maintain the level of care needed but who do get a lot of help and support from their family and friends Profile 4: Carers who experience their task of caregiving as very demanding and who do not receive much support from family and friends 100

101 Profiles of caregiving Profile 5: Carers who can barely cope with providing the care required by their relative with dementia Figure 2 Difference in adherence scores to profiles of caregiving between t=2 and t=1 (n=44) Profile 1: Carers who cope well with providing care 25,0% 27,3% 47,7% Profile 2: Carers who would like to receive help with providing care but at the same time want to remain in control of the care process 29,5% 36,4% 34,1% Profile 3: Carers who find it quite demanding to maintain up the level of care needed, but who get a lot of help and support from their family and friends 20,5% 31,8% 47,7% Profile 4: Carers who experience their task of caregiving as very demanding and who do not receive much support from family and friends 20,5% 36,4% 43,2% Profile 5: Carers who can barely cope with providing the care required by their relative with dementia 18,2% 29,5% 52,3% 0% 10% 20% 30% 40% 50% lower same higher Note: the bar higher means that those informal carers have given a higher adherence score to that profile of caregiving at t=2 than at t=1, which means that this profile of caregiving describes their caregiving situation at t=2 better than at t=1. 101

102

103 Chapter 5 How spouses evaluate Nursing Home Placement of their partner with dementia: a study about the end of perseverance time Chapter 5 is based on: Kraijo, H., de Leeuw, R., Schrijvers, G. (2014) How spouses evaluate Nursing Home Placement of their partner with dementia: a study about the end of Perseverance time. Scandinavian Journal of Caring Science, doi: /scs

104 Chapter 5 Flow chart related to Chapter 5 t = 0 At home At home t = 1 At home Admitted t = 2 At home Admitted Chapter Research question: How do spouses experience the decision to place their partner with dementia in a nursing home? 104

105 Evaluation nursing home placement ABSTRACT Aim This study was about the final decision by spouses to have their partner with dementia placed in a nursing home. The central question was whether the admission took place in the right time in their point of view. Method Fourteen partners of persons with dementia evaluated the nursing home placement. They were interviewed at home using a semi-structured questionnaire. Grounded theory was used to explore the process of decision making. In addition to the interviews quantitative data were used from a two-year follow-up study. Results Results underline that the placement decision had to be made in phases over time. The first decision is about placement of the relative on a waiting list and the second decision is about the actual placement in a nursing home once a place becomes available. This second and final decision often had to be taken under time pressure in order to avoid a place in the nursing home being left empty. If they had been given more time and space to reconsider their admission decision, most partners said they could have had continued providing home care longer. During the investigation the following classification in timeliness of the admission emerged: Placement was at the right time, too early, too late, or out of control. Conclusion It may be helpful for informal and formal carers to focus on perseverance time in considering placement or prolonged support at home. Placement at an appropriate time may lead to a higher degree of well-being of informal carers before and especially after the admission. 105

106 Chapter 5 INTRODUCTION Having one s partner with dementia put on a waiting list for placement in a nursing home is an important and difficult decision. After making this decision, spouses lives are heavily influenced by the thought of this placement in the near future and its consequences, i.e. permanent separation. In addition, there is the ever-present and unavoidable reality that the death of one s partner is nearing. This situation places an extremely heavy burden on partners of persons with dementia [Meiland et al., 2001; Mittelman et al., 2007; Kraijo et al., 2012]. A lot of research has been carried out about the determinants of nursing home placement [Pruchno et al., 1990; Cohen et al., 1993; Coehle et al., 2007; Chang et al., 2010]. A complex combination of variables related to the characteristics of informal carers, persons with dementia, and the wider context, has varying degrees of influence on the admission decision [Waugh, 2009; Noël-Miller, 2010; Mc. Donnell et al., 2013]. Nursing home waiting lists are used in the Netherlands, as well as in other countries [Morin et al., 2007; Meiland et al.,2002; Fjeltun et al., 2009]. The existence of waiting lists means that, inevitably, the decision by informal carers to place a relative in a nursing home, is made in phases over time. The first decision is to place the person with dementia on a waiting list for a nursing home, mostly based on a decision by the insurance authorities. The second decision is the final decision for placement when, over the course of time, a place in a nursing home becomes available. In the papers we read [Ducharme et al., 2012; Caldwell et al., 2014] it is assumed that the first decision included automatically the final decision. Therewith time for informal carers to reconsider the final decision remains out of view. This issue of phasing of the placement decision seems to be underexplored in its consequences for persons with dementia and their informal carers. Research about decisions of home-care entry are mainly focused on the first admission decision [Corcoran, 1994; Davies et al.,2003; Caron et al., 2006; Söderberg et al., 2012; Abendroth et al., 2012]. At the moment of this study, as far as we know, there was no literature about the difference in phasing in decision-making by the informal carers. In this study, we focus on the final decision for placement in a nursing home. The central focus of this study was the timeliness of placement from the viewpoint of the partners of persons with dementia in order to provide indications 106

107 Evaluation nursing home placement of optimal use of informal care and nursing home capacity as well [Jansson W. et al., 2001; Jansson I. et al., 2009; Lin et al., 2011; Verbeek et al., 2012]. This retrospective study is part of a longitudinal study of perseverance time of informal carers of persons with dementia living at home (see figure 1). Perseverance time is defined as the period of time informal carers indicate that they can continue care for their dementing relative under current conditions [Kraijo et al., 2014]. We examined how partners of persons with dementia feel afterwards about their final admission decision to place their partner in a nursing home and if the admission took place at the right time in their point of view. Figure 1. Flow chart Longitudinal study Perseverance time, Sub collection: Admission Population t=0 (year 1) t=1 (year 2) Included respondents (n=198) At home (n=74) Admitted to a nursing home (n=82) Admitted to a nursing home (n=20) t=2 (year 3) At home (n=44) Research population 14 partners of relatives with dementia 107

108 Chapter 5 METHOD Study population The informal carers of persons diagnosed with dementia, participating in the longitudinal study, were recruited in co-operation with the assessment agency of the Dutch Exceptional Medical Expenses Act in a region near Amsterdam. The assessment agency sent a letter to the home address of all the persons with dementia, directed To the primary informal carer of [name person with dementia]. The letter explained the purpose of our study. In addition, the letter explained that: 1. their decision to participate in the study was voluntary 2. anonymity of data from questionnaires returned was guaranteed (and how), and 3. by returning the questionnaire they gave permission to use the data they provided for the purpose of this study (as described in the letter). Figure 1 shows that during the longitudinal study 102 persons with dementia were admitted to a nursing home including 47 persons with dementia with a spouse as informal carer. Forty-three of them participated in a previous study investigating profiles of informal carers [Kraijo et al., 2012]. After a personal request by phone 22 of them were willing to give their consent for this second and separate study. The most important reason for not participating of four spouses was the desire to close a stressful period. Finally 14 spouses participated in this study. We have chosen for spouses of persons with dementia because they are day and night permanently involved in caring for their relatives. We also selected them on the basis of urgency of the admission and whether the placement was necessary in connection with their own health or the health of their partner with dementia. Finally we also tried to realise a gender equal distribution. This selection should lead to a variety of considerations taken into account in making the final admission decision. Theoretical setting In performing and analysing the interviews we chose an interpretative view: people define their situation in their daily interaction with one another and from their surroundings [Boeije, 2005; Baarda, 2006]. This choice appeared to be the most suitable in studying the social reality of informal carers of persons with dementia. The grounded theory approach [Glaser et al., 1967; Strauss, 1987] supposed to lead to the emergence of categories in perspective of the research 108

109 Evaluation nursing home placement question of timeliness of the final decision of nursing home placement. Those categories of care situations can/should be used as building blocks for designing a model for decision making of admission to a nursing home. In this study we used a parallel nested strategy. That means that we used some of the earlier collected data of the quantitative longitudinal study. From that study, we obtained more information about subjective burden, measured by the Self Rated Burden [Van Exel et al., 2004], well-being, measured by the CarerQol-VAS [Brouwer et al., 2006]. We compared those variables at two different times. At the first moment the relative with dementia was still living at home. The second moment in time was one year later. Between those moments the relative with dementia has been admitted to a nursing home (see table 1). Table 1 Care situation of the participants (N = 14) 14 spouses Care situation before the admission of the partner with dementia Persons with dementia Age (years Co-morbidities (Y=yes, N=no) Y Y Y Y Y Y Y Y N Y Y N Y Y Care dependence (VAS 0-10) Spouses Age (years) Gender (M=male. F= female) F M F M F M F M M F F M M M Self-rated burden (VAS 0-10) Well-being (VAS 0-10) Admission Because of the health of D or S 1 S D D S D D S S D S S D D D Care situation after the admission of the partner with dementia After admission Self-rated burden (VAS 0-10) Well-being (VAS 0-10) Perseverance time Interview time after admission (months) ) D=Partner with dementia; S=spouse 2) 1 = < one week, 2 = > one week < one months, 3= > one month < six months and 4 = > one year 109

110 Chapter 5 Data collection and processing The interviews took place about eighteen months after the admission of their partner to a nursing home, were audio recorded, literally transcribed and processed into anonymous thematic reports. The reports were returned to the spouses for their approval. The evaluation of the definitive decision for admission by the informal carers was focused on the timeliness of placement. During the semi-structured interviews, the question on the timeliness of placement was formulated on the basis of questions in text box 1, worked out in a checklist for use at the end of the interview. In this way a uniform basis for constant comparison was ensured. Textbox 1 - At the time of institutionalization, could you have continued to manage caring and/or did you want to manage for a longer period of time? - Which persons or agencies were important to you when you were making the decision about placement? - Do you think placement came at the appropriate time? - Were there any circumstances beyond your control that influenced your decision? A standardised approach to report the source data was chosen, i.e. citations were modified only for readability. Each interview was processed before the next interview took place. This way of working was conductive to a concentrated focus on each next interview. The transcripts reports approved by the informal carers (member s check) formed the basis for the analysis. The first author did all the interviews and was familiar with the theme of this study because of his experience as former CEO of several care organizations. Analyses Data analyses were carried out using the constant comparative method in order to discover a relevant classification. Transcribed interviews were analysed line by line and analytical notations were made resulting in a thematic reports (coding). In this way the comparative analyses were carried out. Data were analysed by using WinMax 98. In support of the analysis, short summaries of events and evaluations have been drawn up which focus on the limits of perseverance time. 110

111 Evaluation nursing home placement As result of this analytical process we should be able to explore the decision process by informal carers of admitting a relative with dementia to a nursing home. The analytic process can be characterised as an iterative process of action learning and discovery, supported by the discussions in the authors group. After fourteen interviews virtually no new points of view or experiences emerged from the interviews. RESULTS Characteristics of the study population Table 1 shows an overview of quantitative data of the fourteen spouses. Almost all of the partners and their husbands were around 70 to 80 of age. The situation of the relatives with dementia before placement was characterised by high care dependence and co-morbidity. In the period after nursing home placement the burden of care reduced and at the same time spouses felt less happy. A quote may explain how un-happy feelings showed up: I have cared for her for a period of sixty years and wanted to take care for her much longer. So, after the admission I felt guilty about it because I had to leave caring to others. That is what me makes very unhappy. Moreover I was convinced that I could have persevere longer in caring for my wife. At the time of placement: How did the informal carer act? Before placement most of the spouses had indicated that they wanted to care for their partner at home for as long as possible. Some spouses did not have that wish any longer, which seemed to be related to the high level of burden they experienced due to severe co-morbidity and of incontinency of their partners. At the end my children said to me: Mam you will go under yourself. I really could not persevere any longer at the end and that all gave me the decisive to accept the admission of my husband. 111

112 Chapter 5 The majority of the spouses indicated afterwards that they were not ready for placement when it occurred. In retrospect, they thought they could have managed caring for their partner at home for longer than they did. Sometimes the situation was beyond their control, for instance when the informal carer had to be admitted into a hospital. Placement was unavoidable at that time. I could have coped for longer if she hadn t had a brain infarction. At a certain point in time they said to me you can t go on any more. I thought about it as a great shame of course. But that is the way it is. In the majority of the cases spouses reported they were able to manage longer because there was no direct need to place their partner in a nursing home in their point of view. They nonetheless did allow it to happen. In the opinion of the informal carers, the reason for this was especially the perceived urgency to accept the placement in a nursing home when a place was offered. Which persons or agencies played a role in making the decision? The involvement of relevant care facilities with informal carers and persons with dementia was largely limited to the logistic preparations for placement. Time and space for informal carers to (re)consider carefully their decision was not provided in the protocols of the nursing homes. When asked who was most influential in the placement decision, some spouses answered that they had made the decision in consultation with their family or general practitioner. In other cases they felt that the nursing home or hospital had put them under pressure to agree to the placement. The motive for this to their opinion was that the place that had come free should be taken as soon as possible for financial reasons. All of a sudden it all went too quickly. We were told: You can say yes now but if you don t then it could be a very long time before you can do it again. So indeed I gave permission for her to be placed. Interviewer: What did you think about the situation? Well, you are confronted with the facts, aren t you? And you cannot oversee the consequences, but if it is put like that she can be placed tomorrow but if you say no then it may be years before it s possible again. That s how they put it to you. 112

113 Evaluation nursing home placement Some spouses said that the hospital had a dominant influence. The hospital wanted a transfer to a nursing home as quickly as possible in order to avoid an expensive hospital bed being blocked by a nursing home patient. In one situation the decision was a joint one that had been made in advance by the carer and his partner with dementia. They had decided that they wanted to stay together for as long as possible. When the situation became untenable, it was the partner of the person with dementia who decided to apply for a crisis placement. A completely untenable situation. My wife was also very sad because she realised only too well then it was all going wrong. She actually understood that she didn t understand. In the majority of the cases a kind of case manager was able to offer support but after the partner had been put on a waiting list for a nursing home, case management offered by the home care organization was often terminated, and in one case taken over by the nursing home. The spouses had the opinion that the effectiveness of case management was mainly determined by the quality of communication by the case manager. They found that case management loses its effectiveness if communication is strictly business-like and predominantly supply-orientated. I really could not communicate with my case manager. She knew very well what I have to do and what I don t have to do. So I told her that she will come to a better understanding when she took over for a month. A calamity often proved to necessitate an emergency placement. In these cases there were no alternative options, because, for example, the person with dementia had had a brain haemorrhage and placement had become unavoidable. However, sometimes the policy of the nursing home was so forceful that the informal carers had no other option than to agree with placement (see text box 2). 113

114 Chapter 5 Textbox 2 Placement was necessary as the informal carer had to have a knee operation followed by a period of rehabilitation in a convalescent home. The nursing home did not want to extend the temporary placement and confronted the informal carer with the choice of either returning home or permanent placement. Thus, this situation beyond control was to some extent created by the nursing home. In the citation below, the informal carer interprets how her partner with dementia experienced the situation. We tried again when I was able to walk a bit. He came to lunch and said Why do I have to leave? I m not going to set the place on fire. Oh it was awful. Overall evaluations of timeliness by spouses: a classification During the interviews it appears that the partners of persons with dementia were able to classify in retrospect the placement in: at the right time, too early, too late, or beyond their control. Some spouses indicated to have experienced a situation beyond their control. This resulted either from somatic calamities (in one case a broken hip in the other a brain infarction) or from the policy of the nursing home. The other cases resulted in a differentiated picture of what the partners of persons with dementia thought about the timeliness of the placement. A small minority of spouses thought that the placement was at the right time. When the nursing home offered the place, the informal carer was no longer able to cope with the situation at home. I had one evening to make the decision. It was very tough. I didn t feel pressurised because I had the option. I knew it would happen sooner or later. But it was at such a short notice. Interviewer: Were you prepared for it? Yes, I was prepared for it. Another group of spouses thought that placement came too early, and said that the admission could have been postponed or possibly even avoided. They thought they could have cared for their partner at home for longer. The structure of the placement process had a lot to do with the fact that placement nevertheless took place. 114

115 Evaluation nursing home placement Interviewer: Did you want to go on in caring for your partner? Yes, I did actually. I really didn t want him to go there. On the other hand, they offered us a place and I had to say yes, I couldn t say no because you do not know what would happen then, and his incontinence was getting worse. It was a real bother. After you get them clean again you think well that s that sorted out and then all is well again and you have a nice cup of coffee or something. Now and again we used to go for a walk, here and around the house. We could still sometimes enjoy ourselves when he was still at home. It wasn t unpleasant but his care was very demanding. Interviewer: Could you have continued to cope with more care at home? Yes, may be I could. This shows that there is continuous tension between willing and being able to. Willing to is almost always present, from the moment that persons with dementia are on the waiting list, being able to is almost never proactively facilitated by homecare organizations or nursing homes. In a minority of cases the spouses said that placement came too late and a crisis placement became necessary. Due to the scarcity of crisis beds, these placements were not at the nursing home of their first choice but in another care facility. These informal carers said that they had been severely overburdened for quite a long time. The following case history (see textbox 3) illustrates that these situations are not always unambiguous. 115

116 Chapter 5 Textbox 3 A 60-year-old woman cared for her 82-year-old husband who was suffering from vascular dementia. Following temporary placement for observation he deteriorated so much that an adjustable bed had to be placed in the living room, much more care was required and his problems increased. Someone from the home care services came in each morning to give care. During and after admission for observation his dementia worsened. He enjoyed all the attention but he was not aware that there was anything wrong with him. My husband is a champion in ignoring things. He will never admit that he is ill. For example he will say: I went for a long walk today. He hasn t been able to walk for two years now. On the other hand he never feels content. He just wants to go home. His personality is still there. As the family says: He may have dementia but he is not backward [during his working life he was a medical specialist]. She felt she was carrying a very heavy burden. It was only after her brotherin-law saw that she could no longer cope and insisted upon it, that she started the placement procedure. Two years after placement, she made the following evaluation when answering the question if she could have coped any longer. Asking for help is always difficult. Moreover, it is really difficult to explain exactly what sort of help you are looking for. Persons sometimes say to me, come on, speak up and say what you want. There was a case manager but one who did not fit. They simply did not get along. I was not assertive enough to telephone the organisation and ask them to send another case manager, preferably a woman. Only after attending a course with other informal carers did realises how much use a good case manager could be. Someone you can turn to and who understands the situation. She wished that she had had someone like that. Then she would have coped for longer. 116

117 Evaluation nursing home placement This case history is double charged: The crisis situation could have been avoided if the case manager s guidance had been more effective. Placement could perhaps have been postponed to a later date. From this point of view, placement was too early and might have been avoided altogether by providing home nursing. On the other hand, placement was actually too late when considering the severely stressed situation that she found herself in which necessitated another family member organising the placement. DISCUSSION AND IMPLICATIONS FOR PRACTICE This study about the final admission decision of partners of persons with dementia placed in nursing homes underlines that the nursing home placement decision is taken in phases over time. The first decision is to place the person with dementia on a waiting list for a nursing home. The second and final decision is about the actual placement and is taken by informal carers when a place in a nursing home becomes available. That is the very moment for decision making by the informal carers. The admission process was mainly started because of a purely administrative reason instead of desirable careful assessment of carer capacity. The classification of the final admission decision of the informal carers in: at the right time, too early, too late or out of control, generated knowledge on placement practices and the effects they have on the (over)burdening of informal carers, and on the timeliness of placement. Special attention for the category too late and out of control could help to prevent possible crisis situations. In general, a more informal carer oriented admission process stimulates that the admission takes place at an appropriate time by tuning mutual expectations to one another. During the waiting list period there was discontinuity in support by a case manager. In most cases the formal carer of the home care organization wrongly assumed that the support of the informal carer was taken over by the nursing home where the person with dementia was placed on the waiting list. Such miscommunication between two care organization causes discontinuity in caring. These experiences underline the need of cooperation between the home care organization and the nursing home. The most effective appointment seems to be that the nursing home takes over the case management at the 117

118 Chapter 5 moment the person with dementia is placed on the waiting list. The knowhow and expertise of the nursing home is than available from that moment and can be used to support the informal carers and the persons with dementia as well. Some interviewees suggested that more help from an adequate case manager might have helped to postpone institutionalization. This needs to be tested in future research. Although positive results have been reported before [Vernooij- Dassen et al., 2004], a systematic review of randomised controlled studies did not confirm the effectiveness of case management [Pimouguet et al., 2010]. It is important to consider the right conditions for effective case management [Verkade et al., 2010] such as coordination of the support and a client orientated approach. This study has shown that the timeliness of placement may be viewed differently by the nursing home and the informal carer, based on their different viewpoints and aims. Including informal carers in the decision-making about nursing home placement of their relative with dementia would avoid the situation in which placement is delayed or takes place too early. The number of out-of control situations would be also reduced, or at least they probably would be noticed at an earlier stage. Strang et al. (2006) plead for the full incorporation into care of informal carers. Schoenmakers et al. (2009) are of the opinion that informal carers should have a key role to play in decisions about placement of their relatives in a nursing home. If the aim is to increase the perseverance time of informal carers, it seems important to better monitor their willingness and ability to continue informal care provision. The perseverance time of informal carers could, for instance, be prolonged if the transition from home to nursing home would be moderated by providing quick access to support at home when in need and waiting time guaranties for when perseverance time has run out [Van Exel et al., 2008]. This may also facilitate early diagnosis of excessive burden of informal carers. Cooperation between ambulant and intramural institutions can prevent discontinuity in support of the informal carers. Time and space for informal carers to (re)consider their decision for admission of their relative with dementia could be facilitated by nursing homes and can provide a placement in appropriate time for the informal carers and for the nursing home as well. 118

119 Evaluation nursing home placement Placement at an appropriate time may lead to a higher degree of well-being of the informal carers before and especially after the admission and resource savings can be realized by prolonging support in the homecare situation. Strengths, limitations and further research The strength of this study is the mix of quantitative and qualitative data. We see congruence between both. Another strength is that we distinguish the two following steps in decision making of admission to a nursing home: The first decision is about placement of the relative on a waiting list and the second decision is about the actual placement in a nursing home once a place becomes available. The awareness of that difference makes it easier to find bottle necks in the admission process. Fourteen partners of persons with dementia living at home were asked about their experiences of placement from the perspective of perseverance time. The interviews took place about eighteen months after the admission, a period of assumed acceptation by the informal carers of the admission of their partners. Partners said they could remember events surrounding the placement as if they only happened yesterday. That phenomenon is usual regarding major emotional life events [Cocenas-Silva et al.,2012; Schmidt, 2012]. Nevertheless there may be some memory bias. Although the results of this study primarily refer to partners of a person with dementia, it is expected that other groups of informal carers would also appreciate timely placement. Previous research has shown that persons with dementia remain at home longer if they are cared for by their partner [Vernooij-Dassen, 1996]. This study has shown that targeted support and time for reconsidering the admission decision can enable informal carers to persevere in caring for their relative with dementia. We expect that placement for those who cared for by informal carers can be postponed by appropriate support. Further research is necessary to test this hypothesis. Indeed, the social and societal context of this group of informal carers is very different from that of cohabiting partners of persons with dementia living at home [Pot et al., 2001; Nieboer et al., 2010]. The results of this study based on the experiences of informal carers should be a moral obligation to develop a shared decision model for admission of care at home to nursing home care. 119

120 Chapter 5 CONCLUSION Nursing home placement decisions are made in phases over time. Spouses indicated they could have kept on giving care for a longer period of time if they had been given more time and space to make their final decision about the admission of their partner. It may be helpful for informal and formal carers to focus on perseverance time in considering placement or prolonged support at home. Policy agreement between ambulant and intramural institutions can prevent discontinuity in supporting informal carers. Placement at an appropriate time may lead to a higher degree of well-being of the informal carers before and especially after the admission. 120

121 Evaluation nursing home placement 121

122

123 Chapter 6 Right Time Transition of persons with dementia to a nursing home in informal cares point of view: A longitudinal study of perseverance time Chapter 6 is based on: Henk Kraijo, Rob de Leeuw, Guus Schrijvers. (2014) Right Time Transition of persons with dementia to a nursing home in informal cares point of view: A longitudinal study of perseverance time. Submitted paper.

124 Chapter 6 Flow chart related to Chapter 6 t = 0 At home At home t = 1 At home Admitted t = 2 At home Admitted Chapter Research question: How is the timing of placing persons with dementia in nursing homes related to the perseverance time of their informal carers? 124

125 Right time admission to a nursing home ABSTRACT Introduction and aim This study answers the question: Could informal carers have persevered in caring if the transition to a nursing home of their relative with dementia had not taken place at that particular time? Method Before and after transition 88 informal carers completed a questionnaire with items about their actual care situation. Associations between perseverance time and characteristics of the care situation were explored by bivariate and multivariate analyses. The recent validated measure of perseverance time was used to answer the research question. Results Half a year after the admission 53% of the informal carers reported that they could have persevered longer in caring for their relative with dementia if the admission to the nursing home had not taken place at that time. Perseverance time was associated positively with characteristics of informal carers: male gender, health, and still feeling an informal carer after admission. Perseverance time associated negatively with living in the same house with the relative with dementia and subjective burden. Crisis situations associated positively with retrospective perseverance time. Conclusion Monitoring care situations by perseverance time appears to be helpful to provide timely support and transition to a nursing home at an appropriate time for informal carers. To achieve that goal it is useful to start a timely discussion between formal and informal carers based on cooperation agreements between home care facilities and the nursing home. 125

126 Chapter 6 INTRODUCTION Admission to a nursing home is a major and emotional event in the life for both a person who is admitted and for the immediate family involved. This applies in particular to admissions that are irreversible such as in case of dementia and should therefore be surrounded by intensive care and support [Sury et al., 2013]. Research has been performed to look for determinants for nursing home admission of persons with dementia [Pruchno et al., 1990; Hope et al., 1998; Smith et al., 2001; Coehlo et al., 2007; Gaugler et al., 2010]. To support informal carers in their wish to continue care as long as possible [Van Exel et al., 2008] it is desirable to study the way in which informal carers can be supported [Rosa et al., 2010]. Many interventions have been devised to support informal carers to do this [Acton et al., 2001; Vickrey et al., 2006; Cooper et al., 2007]. It is also important that the informal carers personally indicate by themselves how long they think they will be able to persevere in caring. The term Personal case management [Vernooij-Dassen et al., 2004] symbolises their wish for selfmanagement. In the Netherlands was no instrument available for planning and evaluation of the admission process by informal carers of persons with dementia [Wierdsma et al., 2011]. Therefore we developed and validated the concept of perseverance time (PT) of informal carers of persons with dementia [Kraijo et al., 2014]. In a longitudinal study the predictive value of PT was tested [Kraijo et al., 2014] and it appeared that informal carers were able to make a reasonable indication of the end of their caring capacities. Relatively little attention is paid to the experiences of informal carers of the admission of their relative with dementia. [Garity, 2006; Strang et al., 2006; Gaugler et al., 2009]. A qualitative study showed how spouses experiences the moment of admission in the perspective of their PT [Kraijo et al 2014]. In that study it appeared that those spouses often had to be taken the final admission decision under time pressure in order to avoid a place in the nursing home being left empty. They found that if they had been given more time and space to reconsider their admission decision, most partners said they could have had continued providing home care longer. The present quantitative study answers the research question: Could informal carers still have persevered in caring if the admission to a nursing home of their relative with dementia had not taken place at that particular time. It also examines 126

127 Right time admission to a nursing home in what way their hindsight PT was related to characteristics of the person with dementia, informal carers and of the care situation. The expectation was that the answers to that research question could provide incentives to improve the effectiveness of the transfer care process. METHOD Sample The informal carers participating in this study were recruited in co-operation with the assessment agency of the Dutch Exceptional Medical Expenses Act in a region near Amsterdam. There is no formal registration of informal carers in the Netherlands, but regional assessment agencies have a registry of diagnosed persons with dementia living at home receiving formal help, for instance home care. The assessment agency sent a letter to the home address of all the person with dementia in their registry diagnosed with dementia, directed To the primary informal carer of (name person with dementia). The letter explained the purpose of our study, why the assessment agency supported the study by sending out this letter, and how anonymity of data from questionnaires returned was guaranteed. Attached to the letter were a questionnaire and a stamped return envelope, with the address of the University. In order to stimulate response a reminder was sent after four weeks. By sending in the questionnaire informal carers confirmed their participation in this longitudinal study. Questionnaires Informal carers included in the study received two follow-up questionnaires from the University after one year (t=1) and two years (t=2). One questionnaire to participate in the longitudinal study and another questionnaire for the informal carers of relatives with dementia who were admitted to a nursing home. The first follow-up questionnaire was an abbreviated version of the baseline questionnaire, which consisted of a comprehensive set of questions about the informal carer, the person with dementia and the informal care situation (e.g., objective and subjective burden of care, need for support, adjustments in work and other activities). The questionnaire for informal carers of relatives with dementia who had been admitted consisted of questions about the reason for the admission, 127

128 Chapter 6 their own health status, burden and well-being after the admission, how they experienced the admission and to what extent they were involved in the care of their relative in the nursing home. Figure 1 shows that during the longitudinal study 102 persons with dementia were admitted to a nursing home. We compared care situations at two different times. At the first moment the relative with dementia was still living at home. The second moment in time was one year later. Within that year the relative with dementia has been admitted to a nursing home. Subjective burden was measured with the Caregiver Strain Index (CSI) [Robinson, 1983; Sullivan, 2003] and the Self-Rated Burden (SRB) [Van Exel et al., 2004]. The CSI consists of 13 items that refer to problems informal carers can experience and has a sum score of 0, no burden, to 13, problems in all 13 items. A score of 7 or higher is defined as substantial burden [Brouwer et al., 2006]. The SRB concerns a visual analogue scale (VAS) on which informal carers indicate how burdensome they experience the informal care; the scale runs from 0, not at all burdensome, to 10, too burdensome. Well-being was measured with the CarerQol-VAS [Brouwer et al., 2006; Hoefman et al., 2011]. This scale runs from 0, not at all happy, to 10, completely happy. Health of the persons with dementia and the informal carers was measured with a VAS that runs from 0, worst imaginable health, to 10, best imaginable health. Care-dependency is also measured with a VAS that runs from 0, full self-reliance, to 10, full dependency. Informal carers of admitted relatives with dementia were asked for how long they could still have persevered if the admission had not taken place (not one day longer; one or two days; more than two days, but less than one week; more than one week, but less than one month; more than one months, but less than six months; more than six months, but less than one year; more than one year but, less than two years, and more than two years). Perseverance time in months is determined by taking the middle of the category in the first seven answer categories (for example 3.5 months for the category more than one month, but less than 6 months ) and was arbitrarily set at 30 months in the (open-ended) sixth category more than two years. 128

129 Right time admission to a nursing home Statistical analyses Descriptive statistics of all variables are presented in mean and standard deviation and range. Difference between sub samples were explored by Chi 2 - analyses (ordinal variables) and by one-way ANOVA (continuous variables). Statistical analyses were conducted with SPSS Multivariate analyses were presented for two different models Figure 1. Flow chart longitudinal study perseverance time, sub sample: admission population t=0 (year 1) t=1 (year 2) t=2 (year 3) Study sample (n=198) At home (n=74) At home (n=44) Admitted to a nursing home (n=82) Admitted to a nursing home (n=20) Study sample (n=88) 129

130 Chapter 6 RESULTS The response rate of the 102 informal carers of admitted persons with dementia was 86.3%. The most important reason for non-response was the desire of informal carers to close a stressful period. Table 1 shows the sample characteristics of the 88 participating informal carers half a year before admission of their relative with dementia. The relatives with dementia were aged 80-plus with a high score of comorbidity and care dependence. The informal carers had a mean age of 65 years and were in relatively good health. The following sub-samples are recognizable: Informal carers living at home with their relative with dementia (mostly spouses: 92%) and those who are living elsewhere (mostly children: 88%). Another relevant sub-sample is: the persons with dementia living alone, because their situation seems to be extra vulnerable. Table 1 Sample characteristics average half a year before admission (n=88) Characteristics N (%) Mean (sd) Range Persons with dementia Age Years (6.5) Gender Female 55 (62.5) Male 33 (37.5) Marital status Married/having a partner 53 (60.2) Single 35 (39.8) Living alone Yes 31 (35.2) No 57 (64.8) Health status VAS (0-10) (1.9) 1 10 Co-morbidities Yes 64 (72.7) No 24 (27.3) Supervision Needs constant supervision 20 (22.7) Can be left alone for one hour at the very 19 (21.6) most Can be left alone for a couple of hours 49 (57.7) easily Care dependence VAS (0-10) (2.0) 1 10 Informal carers Age Years (13.2) Gender Female 56 (63.6) Male 32 (36.4) Marital status Married/having a partner 71 (80.7) Single 17 (19.3) 130

131 Right time admission to a nursing home Characteristics N (%) Mean (sd) Range Children at home Yes 9 (10.2) No 79 (89.8) Education level Low 10 (11.4) Middle 57 (64.7) High 21 (23.9) Employed Yes 29 (33.0) No 59 (67.0) Health status VAS (0-10) (1.5) 3 10 Well-being VAS (0-10) (1.7) 1 9 Relationship Relative with dementia is Partner 43 (48.9) Parent (in-law 39 (44.3) Other (family) relationship 6 (6.8) Living together Yes 47 (53.4) No 41 (46.6) Table 2 indicates the burden of the care giving situation half a year before admission. In general the situation can be characterized as a full-time job for informal carers with different adjustments in order to persevere in caring for their relative with dementia. Of them, 72% felt overburdened (CSI 7) and almost all informal carers (90%) desired additional support. Table 2 Burden of the care giving situation average half a year before admission (n=88) Characteristics N (%) Mean (sd) Range Objective burden Intensity of informal care giving Days per week (2.6) 0 7 Hours per week (36.4) Formal care at home Yes; Hours per week 68 (77.3) 8.1 (12.3) Support by other informal carers Yes; Hours per week 47 (53.4) 8.8 (12.7) 1 84 Adjustments Adjusted working hours 7 (8.0) Reduced volunteer work 10 (11.4) Abandoned hobbies 31 (35.2) Subjective burden Caregiver Strain Index (CSI) Score (0-13) (2.9) Substantial strain Score 7 64 (72.7) Self-Rated Burden (SRB) VAS (0-10) (2.0) 1 10 Desire for additional support Yes 79 (89.8) No 9 (16.2) 131

132 Chapter 6 Table 3 shows the sample characteristics half a year after admission of the person with dementia. The amount of crisis admissions was 35%. These admissions were the result of an unpredicted bad health situation of the person with dementia (84%) or informal carer (16%). Afterwards the experience of the admission as such appeared more positive for the informal carers than expected before the admission. Nearly all informal carers were still involved in caring for their relatives in the nursing home (99%) and 47% of them perceived themselves still as an informal carer. Most informal carers (86%) who visited their relative with dementia gave practical support. A small percentage of the informal carers performed volunteer work in the nursing home. Self-Rated Burden after admission (4.3) was lower than the burden before the admission (6.4). However the degree of health and well-being remained virtually the same. Informal carers indicated that they could have persevered in caring at home for average six more months. We defined a right-time placement in cases where informal carers reported a retrospective perseverance time of less than one month (= 47%). This implies that in 53% of the cases, admission could have been postponed. 132

133 Right time admission to a nursing home Table 3 Sample characteristics average half a year after admission (n=88) Characteristics N (%) Mean (sd) Range Admission Planned admission due the health of the person with Yes 45 (51.1) dementia Planned admission due the health of the informal carers Yes 12 (13,6) Crisis admission due unpredicted bad health person with Yes 26 (29.5) dementia Crisis admission due unpredicted bad health informal Yes 5 (5.7) carer Experiences of the admission by informal carers Dread of the admission by the person with dementia Yes 33 (37.5) No 55 (62.5) Dread of the admission by the informal carer Yes 60 (68.2) No 28 (31.8) Admission was better than expected by the person with Yes 32 (36.4) dementia No 56 (63.6) Admission was better than expected by the informal carer Yes 47 (53.4) No 41 (46.6) Involvement informal carer after admission They felt still informal carer Yes 42 (47.7) No 46 (52.3) Visiting their relative with dementia Yes 76 (86.4) No 12 (13.6) Gave practical support in the nursing home Yes 39 (44.3) No 49 (55.7) Doing voluntarily work Yes 6 (6.8) No ) No involvement Yes 1 (1.1) No 87 (98.9) Burden and well-being after admission Self-Rated Burden (SRB) VAS (0-10) 4.3 (2.1) 0 10 Well-being VAS (0-10) 6.2 (2.0) 0 9 Health status VAS (0-10) 6.9 (1.7) 0 10 Perseverance time after admission (retrospective) Not one day longer 9 (10.2) One or two days 5 (5.7) > two days < one week 6 (6.8) > 1 week < one month 21 (23.9) > one month < six months 24 (27.3) > six months < one year 10 (11.4) > one year < two year 5 (5.7) > two years 8 (9.1) Months 5.9 (8.9)

134 Chapter 6 Table 4 presents the associations between perseverance time in months and the characteristics before admission of persons with dementia, informal carers, care situation, the nature of the admission, and the perception of their role as informal carer. Perseverance time was associated positively with the characteristics of the person with dementia: feminine gender and living alone and the following characteristics of the informal carers: having a partner, being employed, wellbeing, a parent relationship and still feeling an informal carer after admission. PT was associated negatively with the person with dementia having a partner and the following determinants of the carer: age, living together with the relative with dementia, and subjective burden. The mean PT value in months is particularly dependent on the value of 30 months for the last category. If 48 months was chosen for this last open-end category all associations presented in table 4 were also statistically significant for perseverance time. We defined a right-time placement in cases where informal carers reported a retrospective perseverance time of less than one month (= 47%). This would imply that in 53% of the cases, admission could have been postponed. 134

135 Right time admission to a nursing home Table 4 Statistically significant associations of perseverance time (PT) with characteristics of relatives with dementia, carers and care situation. Characteristics N PT (months) Relatives with dementia Oneway Anova (p < 0.05) Gender Female Male Married/having a partner Yes No Living alone Yes Informal carers No Age < Married/having a partner Yes No Employed Yes No Well-being Relationship < Relative with dementia is partner Yes No Parent (in-law) Yes No Living together Yes Subjective burden No Caregiver Strain Index (CSI) < Self-Rated burden (SRB) After admission < Admission because of the health of the informal carer Yes No Still feeling an informal carer Yes No

136 Chapter 6 Table 5 presents the results of multivariate analyses based on two binary logistic models with retrospective PT as dependent variable (dichotomized as: more than one week (yes/no) and, more than one month (yes/no)). Independent variables were the characteristics of informal carers, the care situation, the admission status and the experiences of informal carers half a year after the admission. A perseverance time of more than one week was associated positively with the following characteristics of the informal carer and the care situation: a parent relationship with the relative with dementia, health, and still feeling and informal carer after the admission; it was associated negatively with: living in the same house with the relative with dementia, and subjective burden. A perseverance time of more than one months was associated positively with the male gender, and the health of the informal carer; it was associated negatively with living in the same house with the relative with dementia. In both models crisis admission associated positively with retrospective perseverance time. 136

137 Right time admission to a nursing home Table 5 Binary logistic models for retrospective perseverance time Characteristics Perseverance time > one week > months O.R. p O.R. p Informal carers Age Years Gender Male ** Marital status (married/having a partner) Yes Care situation / relationship Relative with dementia is parent (in law) Yes 1.74 * 1.22 Living together with the relative with dementia Yes 1.54 ** 1.10 *** Admission Crisis admission Yes 0.85 *** 0.62 ** Admission because of the health of the informal carer - the health of the relative with dementia Experiences after admission Self-Rated Burden (SRB) VAS (0-10) 0.20 * 0.14 Health status VAS (0-10) 0.33 ** 0.19 ** Well-being VAS (0-10) Still feeling an informal carer Yes 0.86 * 0.61 Constant Nagelkerke R Percentage correctly classified *** p<0.01; ** p<0.05; * p<

138 Chapter 6 The care setting appeared to be relevant in relation to the retrospective perseverance time. The care setting can be characterized by the following items that were highly associated (p < 0.01) to each other: living together, person with dementia is married/ having, care recipient is partner and or parent (in law). Therefore it is interesting to explore all possible other statistical significant differences between informal carers living at home with their relative with dementia and those who were living elsewhere. Table 6 presents those differences. Some remarkable results were: Informal carers living elsewhere cared in 31 cases (75%) for relatives with dementia living alone; Ninety three percent of the informal carers living together with their relative felt overburdened and in 87% there was a child-relationship with the person with dementia (mostly daughter (in law) 83%); Informal carers living elsewhere gave twice as much practical support after the admission (61%) than carers who lived in the same house with their relative (29%). The retrospective perseverance time of informal carers who lived at home with their relative with dementia was 2.4 months; for the elsewhere living informal carers this perseverance time was 9.9 months. Related to the research question of this study, it appeared that there was a significant difference of the Right time Placement (based on the definition of a retrospective PT < one month) between the two categories of informal carers. 138

139 Right time admission to a nursing home Table 6. Care setting and characteristics before and after admission Characteristics Relatives with dementia Total n=88 Care setting Informal carers In home n=47 Elsewhere n=41 Age Years 81.6 (6.5) 79.2 (6.8) 84.4 (4.8) ** Gender Female (%) * Dementing relative lives alone Yes (%) ** Marital status: married/having a partner Yes (%) ** Supervision: needs constant supervision Yes (%) ** Informal carers Age Years 65.4 (13.2) 74.5 (10.0) 55.0 (7.5) ** Age 65 (%) ** Gender Female (%) ** Health status VAS (0-10) 7.3 (1.6) 7.0 (1.5) 7.6 (1.6) * Children at home Yes (%) ** Employed Yes (%) ** Well-being VAS (0-10) 6.5 (1.7) 5.9 (2.0) 7.1 (1.4) ** Relationship Relative with dementia is partner Yes (%) ** Relative with dementia is parent (in-law) Yes (%) ** Objective burden Intensity of informal care giving Days per week 4.8 (2.6) 6.5 (1.4) 2.8 (2.2) ** Hours per week 36.1 (36.4) 55.0 (39.5) 14.5 (13.9) ** Adjusted working hours Yes (%) * Abandoned hobbies Yes (%) * Subjective burden Caregiver Strain Index (CSI) (2.9) 9.6 (2.3) 6.5 (2.6) ** Substantial strain: CSI 7 Yes (%) ** Self-Rated Burden (SRB) VAS (0-10) 6.4 (2.0) 6.8 (2.1) 5.7 (2.1) ** After admission Admission because of unpredicted bad health of Yes (%) ** the informal carer Dread of admission by the person with dementia Yes (%) ** They still felt informal carer Yes (%) ** Gave practical support Yes (%) ** Well-being VAS (0-10) 6.9 (1.7) 5.5 (2.0) 7.0 (1.7) ** Perseverance time Months 5.9 (8.9) 2.4 (5.0) 9.9 (10.9) ** Right Time Placement (PT < one months) Yes (%) ** 1 ) * p < 0.05; ** p < 0,01 p 1 139

140 Chapter 6 DISCUSSION Main results This quantitative study confirmed the fact that informal carers could still have persevered in caring if the admission to a nursing home of their relative with dementia had not taken place at that particular time [Kraijo et al., 2014]. We defined a right-time placement in cases where informal carers reported a retrospective perseverance time of less than one month (= 47%). This would imply that in 53% of the cases, admission could have been postponed. This study contributes to the specific knowledge about experiences of informal carers in the transition phase of their relative with dementia from living at home to a nursing home. There were many differences between informal carers living together with their relative with dementia (mostly partners) and those living elsewhere [Pot et al., 2001; Schneider et al., 1999; Norton et al., 2010]. The differences in perseverance time can be an indication of respectively under or over estimation of their care possibilities. Professional attention of that phenomenon by the formal carers can be helpful in monitoring the care situation. We therefore recommend more research based on the concept of perseverance time with a focus on those two groups of informal carers. Limitations This study was limited in terms of numbers, scope, and geography. Follow-up research on a larger scale is therefore desirable. Informal carers could have overestimated their possibilities to continue their care for their relative with dementia. Complex feelings of loss, guilt, shame, blame, and regret are likely to influence the way they answered. Nonetheless their answers should be interpreted as an important signal for nursing homes to realise a more informal carer friendly admission process. Care setting Caregiving by informal carers living together with their relative with dementia (mostly partners) can be characterized as a fulltime job with a high level of subjective burden. Nevertheless these informal carers wanted to persevere in caring as long as possible to postpone the admission of their partner to a nursing home because that would mean a permanent divorce from each other. 140

141 Right time admission to a nursing home The abandoning of their hobbies were signals for approaching the end of their perseverance time [Kraijo et al., 2014]. Such signals of decreasing social participation should be taken seriously by professionals in order to provide timely support or consider earlier admission. Characteristics of the care situation of the informal carers living elsewhere is in general typical for the differences between two generations: mostly the daughter (in law) is the main informal carer. The overburdening of these carers stems from a combination of care for their parent (in law), their own household and having a job. On the other hand they have more possibilities of respite of the caring task. The tendency to overestimate their capabilities is present in their optimistic perception of their perseverance time. That could also be their pitfall and should be discussed in a monitoring conversation by the formal carer. Only in the care situation of the elsewhere living informal carers it occurs that the relative with dementia lives alone. That situation is fragile and requires extra attention. After the admission to the nursing home, informal carers living elsewhere gave significantly more practical support to their relative with dementia than the in home living carers. It illustrates that the caregiving of those informal carers was more or less the continuation of the care situation at another place. Informal carers living with their relative with dementia experienced the admission as a total change of the care situation. The high amount of overburdening they reported before the admission makes it understandable that they wish to transfer most of the care to the formal carers in the nursing home. Integrated care Reflecting on the literature of integrated care [Van Exel et al., 2008; Norton et al., 2010; Olson et al., 2013; Davis et al., 2000; Ryan et al., 2000] it appeared that transition to another care facility is one of the Achilles heels of integrated care programmes [Latour et al., 2007]. The fact that informal carers in this study indicated that they could have persevered in caring if the admission had not taken place at that time, indicates that the transition process was not appropriate in the view of the informal carers. The results of this study underline the conclusion [Groenewoud et al., 2009] that a transition programme for persons with dementia and their relatives should include timely discussion of the possibilities of informal carers. 141

142 Chapter 6 Timely and periodical deliberation about perseverance time with informal carers can stimulate a demand oriented way of supporting informal carers so that the admission can take place at a suitable time. This statement was supported by the available perseverance time of informal carers after the admission, this time could have been used to postpone the admission. Research by Andrén [2008] concluded that the time of admission can be delayed by psychosocial support of informal carers. On the other hand this support included also the possibility of an earlier admission than thought by the informal carer. Monitoring PT by formal carers might be helpful to prevent crisis situations. We advise to add perseverance time to the toolkit for case managers in dementia care. Further research and analysis of the nature of crisis situations is necessary to find more issues to prevent crisis admissions. CONCLUSION Monitoring perseverance time appears to be helpful to provide timely support for informal carers so that the admission to a nursing home can take place at an appropriate time. To achieve that goal it is useful to start a timely discussion between professionals and informal carers based on cooperation agreements between home care facilities and the nursing home. 142

143 Right time admission to a nursing home 143

144

145 Chapter 7 General discussion and conclusion

146 Chapter 7 146

147 General discussion and conclusion GENERAL DISCUSSION AND CONCLUSION Dementia has a profound effect not only on the daily lives of those who suffer from it, but also on the daily lives of their informal carers. Informal care may range from temporary practical support to full-time long-term care for an ill friend or family member. A defining characteristic of informal care is that, in contrast to voluntary work, this care emanates from a personal and/or emotional tie with the person who is in need of help. There is an increasing number of persons with dementia. At the same time, though, there is a decreasing availability of formal and informal care. This is due to several developments, such as the increased labour participation of women and the geographical dispersion of families. Moreover, providing care to persons with dementia can place a great burden on informal carers. Maintaining sufficient levels of informal care within this context is a difficult and pressing policy issue. One of the challenges is to make optimal use of existing informal care capacity. Within this context, the perseverance time of informal carers could prove helpful. We therefore developed the concept of perseverance time as the period of time that informal carers expect to be able to continue performing their care tasks for their relative with dementia, the length of this period of time is influenced by a combination of factors (described in Chapter 1). We hypothesized that the perseverance time of informal carers could provide a direct way of investigating how long informal carers can continue to provide care. Therefore, the perseverance time measure was operationalized in a direct fashion by asking informal carers of persons with dementia the following question: If the informal care situation stays as it is now, how long will you be able to cope with the care? If it were possible to elicit the perseverance time of informal carers, this could help to prevent the overburdening of informal carers and crisis admissions to a nursing home by providing timely and appropriate support at home. The joint aim of the studies presented here was to explore the feasibility, validity, and added value of perseverance time within the context of decision making in dementia care. 147

148 Chapter Main findings To address the main aim of this thesis, a longitudinal study was designed. For a period of two years, we followed 223 informal carers of persons with dementia living at home. To validate and explore the concept of perseverance time, we carried out several quantitative (Chapters 2, 3, and 6) and qualitative (Chapters 4 and 5) studies to find the answers to the following research questions: Research question 1 (Chapter 2): What is the feasibility and convergent validity of perseverance time? In Chapter 2, we tested the feasibility and validity of the concept of perseverance time in a sample (n = 223) of informal carers of persons with dementia living at home. During the study it became apparent that the perseverance time measure was understandable for informal carers. They were able and willing to indicate how long they expected to be able to continue current care. The convergent validity of the perseverance time measure with subjective burden measured by the Caregiver Strain Index (CSI) and the Self-Rated Burden (SRB) was reasonably strong. Happiness (CarerQol-VAS) was significantly associated with perseverance time, but less strongly than subjective burden. It is important to note that perseverance time is conceptually different from subjective burden. Both measures ask carers to consider the positive and negative aspects of caring. However, in addition to this, the perseverance time measure also asks carers to assess how long they can continue functioning at the current level of burden. Therefore, the perseverance time measure aims to provide more than an indication of the balance between care demands and caring capacity at one particular point in time. Rather, in order to determine the future need for support, it aims to look forward in time and assess perseverance in an informal carer-centred manner. Regular assessment of perseverance time could therefore help to identify carers need for support (or additional support) to enable the care at home to continue, or to start planning a timely transition from care at home to nursing home care. 148

149 General discussion and conclusion Research question 2 (Chapter 2): Which characteristics of the informal carer, the person with dementia, and the care situation are associated with perseverance time? (content validity) In Chapter 2, the content validity of perseverance time was tested in a sample of 223 informal carers by performing multivariate analyses in which perseverance time was related to characteristics of the persons with dementia, the informal carers, and the care situation. The results of these analyses showed that different categories of perseverance time were associated with different sets of characteristics. First, a perseverance time of more than six months was associated positively with the health of the person with dementia, the level of education of the informal carer, and with the degree of satisfaction; it associated negatively with the intensity of the informal care, whether the informal carer has a partner, and whether the informal care comes at the expense of sacrificing hobbies. Second, an expected perseverance time of more than one year was associated with the same variables, but also with others, such as being associated positively with male gender of the informal carer, whether the person with dementia had a partner, and whether the person with dementia was a parent (or parent-in-law) of the informal carer. Finally, an expected perseverance time of more than two years showed the following associations: it was positively associated with male gender of the informal carer, the person with dementia having a partner/living together, and the person with dementia being a parent (or parent-in-law) of the informal carer, and negatively associated with giving up hobbies in order to provide care. Research question 3 (Chapter 3): To what extent is perseverance time indicative of observed perseverance time? (predictive validity) To answer this research question, we noted whether the person with dementia (n = 198) was still living at home after one and two years. This enabled a 149

150 Chapter 7 comparison between indicated (at t = 0) and observed perseverance time after one (t = 1) and after two (t = 2) years. Table 3 in Chapter 3 compares anticipated and observed perseverance time. When making such a comparison, it must be emphasized that while the question about anticipated perseverance time was asked under the assumption that the care situation would not change, it inevitably always did. Still, Table 3 shows that a large proportion of the carers who indicated that their perseverance time was less than one year at t = 0 anticipated this correctly (90.2% of the 41 carers with perseverance time < 6 months; 69.2% of the 39 carers with 6 months < perseverance time < 1 year). Similar numbers were observed at t = 1 (i.e. 90.0% and 64.3%, respectively). Figure 3 in Chapter 3 provides full details on the comparison between anticipated and realized perseverance time. It appeared that informal carers who indicated a limited perseverance time of less than one year were able to make a reliable prediction of actual perseverance time. For instance, of all informal carers who indicated a perseverance time of less than one year (at t = 0), 80% of the persons with dementia were no longer living at home within that year because they had been admitted (67% at t = 1) or had died (33% at t = 1). Research question 4 (Chapter 4): Can different profiles of caregiving be distinguished, and how do these relate to perseverance time? In Chapter 4, we used Q-methodology to distinguish carer profiles. A subsample of 53 informal carers was presented with a representative set of statements covering aspects of informal caregiving for someone with dementia, and these carers were asked to rank these statements. This method of ranking enables the respondents to give their opinion about and attitude towards caregiving. We identified five distinct profiles: (1) Carers who cope well with providing care, (2) Carers who would like to receive help with providing care, but at the same time want to remain in control of the care process, (3) Carers who find it quite demanding to maintain the level of care needed, but who get a lot of help and support from their family and friends, (4) Carers who experience their task of caregiving as very demanding and who do not receive much support from family 150

151 General discussion and conclusion and friends, (5) Carers who can barely cope with providing the care required by their relative with dementia. These profiles also show that informal carers experience a number of dilemmas in performing their care tasks. Moreover, we found a strong association between the identified profiles and the perseverance time indicated by the informal carers. Carers in Profile 1, for example, indicated a longer perseverance time (27.6 months) than those in Profile 5 (14.6 months). In the appendix to Chapter 3, we confirmed that the profiles differed significantly from each other in terms of perseverance time. In this appendix, Figure 1b illustrates the differences in profile scores of informal carers at home at t = 1 and t = 2 (n = 44). After one year of caregiving, a trend from Profile 2 to 4 and 5 and from Profile 4 to 5 can be observed. Research question 5 (Chapter 5): How do spouses experience the decision to place their partner with dementia in a nursing home? Fourteen partners of persons with dementia were interviewed in order to evaluate the nursing home placement. They were interviewed at home using a semi-structured questionnaire. Based on grounded theory, we used the constant comparative method to explore the process of decision making regarding nursing home placement. This study showed that this decision was taken in two distinct steps. The first step entailed the decision to place the person with dementia on a waiting list for a nursing home. The second step related to the decision of actual placement. This decision was normally taken by informal carers when a place in a nursing home became available. Informal carers experienced placement as coming at the right time, too early, too late, or as the result of a crisis situation. This study generated knowledge on placement practices (in the Dutch context) and its effects on the burdening (and overburdening) and perseverance time of informal carers. If an aim of policy is to increase the perseverance time of informal carers, it would seem important to better monitor their willingness and ability to continue informal care provision. Admission processes that are oriented towards informal carers may ensure that admissions take place at the right time, and make this process easier. 151

152 Chapter 7 Research question 6 (Chapter 6): How is the timing of placing persons with dementia in nursing homes related to the perseverance time of their informal carers? To answer this research question in Chapter 6, we examined the informal care situation before and after the transition of the person with dementia to a nursing home in a sub-sample of 88 persons. Six months after the admission, informal carers reported that they could have persevered in providing care for another six months on average if the admission had not taken place. Partners of persons with dementia were better able to predict the end of their perseverance time than other informal carers. Retrospective Perseverance time was associated positively with characteristics of informal carers: male gender, health, and still feeling an informal carer after admission. Perseverance time associated negatively with living in the same house with the relative with dementia and subjective burden. Crisis situations associated positively with the retrospective perseverance time. To answer the research question, we defined a right-time placement in cases where informal carers reported a retrospective perseverance time of less than one month (= 47%). This would imply that in 53% of the cases, admission could have been postponed. Having discussed now the six research questions we come now to a short answer to the overall research question. The joint research question the studies presented here is to explore the, feasibility, validity, and added value of perseverance time, both as a concept and as a measure within the context of decision making in dementia care. Our operationalization of the concept of perseverance time was understandable for informal carers. The convergent and content validity of the instrument appeared to be reasonably strong. This study validated both the concept and the measure of perseverance time for the first time. 152

153 General discussion and conclusion The results of these studies suggest that perseverance time may help with decision making to prevent the overburdening of informal carers, to provide timely support, and to prevent crisis admissions to nursing homes. Nonetheless, we emphasize the need for future research in order to replicate these findings. 153

154 Chapter Limitations and methodological considerations Sample The sample of this cross-sectional study was limited in terms of numbers, scope, and geography. Larger, longitudinal, studies are required to investigate whether our results can be confirmed and also generalized to other settings. This thesis is on informal care within the context of dementia. Studying perseverance time within the context of other chronic diseases would be valuable as well. In our study we made no distinction between different types of dementia, and we used limited variables to characterize dementia. For further research we recommend specific instruments such as the Clinical Dementia Rating scale [Hughes et al., 1982] and the Neuropsychiatric Inventory Questionnaire [Cummings et al., 1994]. It could be interesting to investigate how the staging and symptoms of dementia are associated with perseverance time. This might also provide more clues for preventing the overburdening of informal carers and persons with dementia. Formal carers were not involved in this study, and were not asked to estimate the perseverance time of the informal carers they supported. In practice, it could be useful to match the informal carer s estimate of perseverance time with the estimate of a formal carer (also in interactions between the two) in order to provide appropriate support. Identifying informal carers of persons with dementia for scientific research can be difficult, especially because they are not registered in the databases of health care facilities or insurance companies. Often, they can only be approached through persons with dementia, who (at least when they are in the more advanced stages of dementia) may be listed in such databases. The response rate in informal care research is often low, and may be even lower when using this indirect approach to carers. It would be helpful if health care facilities would also register the main informal carer of the person with dementia. This is important not only for scientific research, but can also prove helpful in practice and result in better management of the care situation. In this study we focussed primarily on following, over time, informal carers who care for their relatives with dementia living at home. Our sampling strategy resulted in a sample of informal carers of persons with dementia who had been diagnosed with dementia three years earlier on average. Hence, we expected 154

155 General discussion and conclusion that the included carers would be caring for oersons in relatively advanced stages of dementia. This may explain why a high proportion of the study population was admitted to nursing homes or died. This course made it possible to investigate differences in care situations between persons with dementia living at home and persons admitted to a nursing home. We did not specifically examine the situations of informal carers of persons with dementia who died during the twoyear follow-up study. This remains an important area for future research. The study on profiles of caregiving described in Chapter 4 was conducted in a subsample of carers who lived in the same house as the person with dementia. However, the Q-set was developed on the basis of opinion statements from carers, regardless of the living arrangements. Further research should show whether the profiles described in Chapter 4 also apply to carers who are not living in the same house as the person with dementia. Methodology The perseverance time of informal carers can be operationalized and explored in several ways. In our study, perseverance time was operationalized in a very direct way by asking informal carers of persons with dementia how long they expected to be able to cope with their current care tasks. Importantly, the question about perseverance time was asked under the assumption that respondents would consider the period they could continue to provide care if the caregiving situation remains as it is now. We considered the addition of this assumption to be important within the context of a progressive illness such as dementia. Without this description, the answers would be more difficult to compare because of different expectations regarding the progression of the illness and what this would imply for caregiving. Still, health care professionals must consider the indicated perseverance time against the background of this question. In principle, the actual perseverance time can usually be expected to be shorter than the observed perseverance time, as the care situation is likely to worsen over time and the caregiving will put more of a strain on carers as a consequence. Therefore, if used in practice, it would be advisable for health care professionals to monitor and carefully interpret perseverance time. In our study, perseverance time was measured by several answer categories ended with the open-ended answer category of more than two years. A more precise estimate of the perseverance time in that last category (e.g. an estimate in months) could be an alternative that could further distinguish between informal 155

156 Chapter 7 carers in this category. However, the information value of this precision is unclear, since we found the predictive value of this answer category to be low. Hence, at this stage of development of the instrument, we recommend the use of the same answer categories for perseverance time to allow comparisons across studies and to confirm the validity of the perseverance time measure used here in further research. In Chapter 5, 14 partners of persons with dementia were asked about their experiences with placing their relative with dementia in a nursing home from the perspective of perseverance time. The interviews took place about 18 months after the admission, which may be considered to be relatively late and may introduce recall bias. While partners indicated having a good recollection of the event (i.e. they could remember events related to the placement as if they happened only yesterday ), we consider the timing of the interview to be a limitation of our study. Hence, to minimize recall bias, we recommend that future studies evaluate placements sooner after the actual event. In Chapter 6, informal carers could have overestimated their possibilities to continue their care for their relative with dementia. Complex feelings of loss, guilt, shame, blame, and regret are likely to influence the way they answered. Nonetheless their answers should be interpreted as an important signal for nursing homes to realise a more informal carer friendly admission process. To study the convergent validity of the perseverance time measure in Chapter 2, subjective burden, measured by the SRB, showed a stronger correlation with perseverance time than the subjective burden, measured by the CSI. This may be explained by the fact that the CSI provides an unweighted sum score of perceived problems in caring, while the SRB is an overall (subjectively weighted) assessment of the care situation that may also include positive experiences. Happiness was significantly associated with the perseverance time measure, but less strongly than with subjective burden. An explanation for this may be that happiness is a much broader concept than perseverance time. 156

157 General discussion and conclusion 7.3. Implications for practice Although formal carers did not participate in this study, the instrument and results presented here may be useful for health care practice. We will discuss some of the potential uses and implications here, without attempting to be exhaustive. Moreover, we would like to stress that more research is needed before largescale applications of the perseverance time instrument can be recommended. Perseverance time and profiles of informal carers The perseverance time question may help to address the current and future needs of informal carers, the availability of timely support to prevent overburdening, and timely admissions to nursing homes. It can provide formal carers with an indication of the urgency with which additional support should be arranged. Especially when respondents indicate a perseverance time of less than a month, this appears to signal a need for support. Most of the crisis admissions took place within a perseverance time of less than six months. The monitoring of perseverance time by formal carers may be a useful tool for preventing crisis situations. The predictive value is less clear when respondents indicate a perseverance time of more than two years, and, once again, it would be worthwhile to further investigate the caring capacities of the individuals involved. When a perseverance time of less than one year is indicated, our results suggest that actual admission to a nursing home (or the death of the person with dementia) indeed often takes place within a year. Moreover, the caring profiles we developed may help to assess actual care situations. The profile of an individual care situation can be assessed by inviting the informal carer to complete the response sheet (see Chapter 4). Differences between care settings Care settings can differ, with important implications for burden and perseverance time. For instance, the informal carers in this study who lived with their relative with dementia (usually partners) were heavily involved in caregiving ( caregiving round the clock ), had fewer opportunities for respite, gave up more hobbies, and felt overburdened more frequently than informal carers who lived elsewhere. Informal carers who lived elsewhere (usually the children of persons with 157

158 Chapter 7 dementia) were more frequently employed and had more opportunities for respite, which may make the care less burdensome. Informal carers who lived with their relative with dementia seemed better able to predict the end of their perseverance time than other informal carers. Social participation Informal carers sometimes reduced their paid working hours so they could provide care. Contrary to what one might expect, informal carers who had adjusted their working time downwards still indicated a lower perseverance time than informal carers who had not. Similar effects were also found for reductions in other forms of social participation, such as voluntary work and hobbies. Therefore, such adjustments may indicate a need for extra support rather than increased perseverance time. In this study, giving up hobbies or working hours seemed to indicate that the end of their perseverance time was approaching, and professional carers should therefore heed these signals so that they can provide timely support for informal carers. The interaction between providing informal care and social participation appears to be an important area for future research. Admission process This study suggests that nursing home professionals may view the timeliness of admissions differently than informal carers. Greater involvement of informal carers in the decision-making process regarding the nursing home placements of their relatives with dementia may be a way to avoid placements that are viewed as coming too late or too early. A particularly important goal is to avoid crisis admissions, which have a strong impact on persons with dementia and carers. Cooperation between home care organizations and nursing homes can prevent discontinuity in the support given to informal carers. Nursing homes should provide informal carers with the time and space to consider (or reconsider) their decisions regarding the admission of their relative with dementia; this could lead to more placements that are considered to be timely. While it is not surprising to find a reduction in the subjective burden of informal care after admission, it is important to emphasize that in this study we also found a (limited) decrease in well-being and perceived health after admission. The latter effects appear to reveal something about the impact the admission of the 158

159 General discussion and conclusion person with dementia has on informal carers. Future research could investigate whether such effects could be mitigated (for example, by nursing homes) by providing support to informal carers after admission. Also, carers often continue to be involved in the care for their relative after admission [Hoefman et al., 2011]. Nursing homes may welcome the participation of informal carers in nursing home care and this could have a positive influence on the well-being of informal carers, but this needs to be investigated further. Implementation Because of the practical significance of perseverance time mentioned here, an insurance company in the Netherlands has added perseverance time to their monitoring toolkit for case managers in dementia care to improve the quality of life of persons with dementia and their informal carers [Kroon, 2013]. We recommend that future research should evaluate the use and contribution of perseverance time in practice. 159

160 Chapter Future research This thesis we introduced the new concept of the perseverance time of informal carers in dementia care. Although the first results regarding the feasibility and validity of perseverance time were encouraging, caution is warranted in generalizing these results, given the afore mentioned limitations of the studies presented here. As we mentioned earlier, our results remains to be confirmed in new studies. Specifically, in addition to the issues referred to above, we recommend the following areas for future research: - Larger, longitudinal, studies are required to investigate whether our results can be generalized to dementia care and other chronic diseases. - We recommend performing a follow-up study to investigate the relationship between perseverance time and the stages and symptoms of dementia. This may provide more information that could help to prevent such things as the overburdening of informal carers. - In our study, we operationalized the concept of perseverance time in a very direct way by asking informal carers how long they expected to be able to continue their current care tasks. It would be interesting to investigate the impact of different types of support on the caregiving and skills of informal carers, and by extension, the impact this has on their perseverance time. - We recommend that an additional study using Q-methodology be conducted among informal carers who do not live in the same house as the person with dementia. Profiles of caregiving for these informal carers could help to improve the support provided to them, thus preventing overburdening. - Previous longitudinal studies (such as Pot et al., 1995; Garity, 1997; Gaugler et al., 2007) have documented how informal carers of persons with dementia may adapt to their role. This phenomenon can be characterized as an informal carer trap (in Dutch: mantelval ) [Timmermans et al., 2005]. The concept of perseverance time may be able to help quantify this adaptation process. Follow-up studies are needed to create more awareness of and knowledge on this adaptation process and its consequences for caregiver burden and perseverance time. - In our study, most of the crisis admissions in nursing homes took place in situations where the indicated perseverance time was less than six months. 160

161 General discussion and conclusion Monitoring of perseverance time by health care professionals could help to prevent such situations. Future studies could be aimed at increasing knowledge on crisis admissions (in relation to perseverance time). 161

162 Chapter Conclusion The overall research question of this thesis was to explore the feasibility, validity, and added value of perseverance time, both as a measure and as a concept within the context of decision making in dementia care. Because of the limitations of the studies presented here and the fact that this thesis has presented only the first explorations of these issues, this thesis cannot provide definitive answers to the related research questions. Still, our results suggest that both feasibility and validity of perseverance time as a concept and as a measure are favourable within the context of informal care for persons with dementia. The way we chose to operationalize perseverance time provided a direct way of investigating how long informal carers can continue their current informal care tasks. In addition to its relevance for research in the field of informal care, the measure may also prove useful in practice in providing timely support to informal carers. In closing The basic motivation for this thesis was to develop both a concept and a measure that could help to predict when informal carers of persons with dementia would no longer be able to provide this care, with the aim of preventing overburdening and crisis situations that lead to emergency admissions of persons with dementia. While many questions remain unanswered, we hope that this thesis will contribute to this ultimate goal. 162

163 General discussion and conclusion 163

164

165 List of references Summary Samenvatting Dankwoord Over de auteur